Calling all triple negative breast cancer patients in the UK
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Hello BernieEllen
Thank you for your posts and for the information about Fiona Looney. I bet she was very funny in that topical comedy show.
Thank you for your support to Dulcie.
Who knows, perhaps we shall all meet one day.
Fond wishes.
Sylvia xxxx
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Hello Maria_Malta
I just wanted to let you know that I did listen to the broadcast by Patricia Prijatel and that I agree with you that it was informative and would be useful to the newly diagnosed. I did read something by her some years ago, probably back in 2005/2006.
I do not think that I learned much that was new for me, but it was useful to have it in such a compact form. A lot of it we have discussed on this thread over the past two years and a lot of it is common sense.
I was particularly interested in the first part about managing stress and the fact that she thought that stress may be more specific to TNBC than to other breast cancers. I have always thought that stress may have contributed to my own TNBC.
I was glad to know that she spoke about the stress that is caused by the negative comments we find everywhere about TNBC, mainly that it is aggressive and deadly. I do not think this helps newly diagnosed patients and that it probably discourages them greatly. I know how frightened I was when, without mentioning TNBC in 2005, I was told that the prognosis was not good because it was not hormonal. I was scared stiff and thought I would be dead within months. Here I am more than seven years on!
I also found it interesting to listen about the stress that we have from thinking that we somehow caused our own breast cancer. I vividly remember my breast cancer consultant telling me that I should not feel guilty and that I should not blame myself.
Of particular interest was her advice to reduce stress by getting offline and not spending too much time online. I think that a lot of women are probably spending too much time posting all over the place and becoming very confused. I liked all her advice about not trying to be perfect, not soaking up other people's stress, taking deep breaths, having a cup of tea, doing something active, walking outdoors to help clear the mind, taking up yoga to relieve stress and not using alcohol as a stress reliever, as it is a risk factor in cancer and if it becomes addictive can add to stress.
I also liked her advice not to try to do and be everything, to go for moderation and balance and to give yourself some treats.
Although she said good nutrition and exercise was important, she reminded us that we do not have to go overboard. I agree with that. You need to change gradually to a healthy diet and cannot be expected to run a marathon straight away.
I hope that the week has been good for you.
Thinking of you.
Sylvia xxxx
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Hello everyone
I just wanted to wish everyone posting and viewing a happy and relaxing weekend.
Thanking you all for the effort you put in on the thread.
To bak94, we all hope you are recovering well.
Best wishes.
Sylvia xxxx
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Hello beachmd
I saw you had created a new thread asking about those of us with TNBC, not BRCA1 or 2, who were doing well. I think this question has been answered many times on threads already established. There are lots of us doing well. I am 7 years and 4 months away from diagnosis and feeling very well. I know there are others who have gone much longer than this since diagnosis.
I hope all is well with you. Keep positive about being negative!
Best wishes
Sylvia
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Hello bak94
I just wondered whether you were now out of hospital and how you are doing.
Best wishes
Sylvia
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Hi Sylvia,
I spent one night in the hospital and am doing great physically. Emotionally I am a bit crabby to say the least! I am sure it will turn around soon.
Thank you for caring:)
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Good evening Sylvia
I have had a look at the Susan G Komen web site, there is a lot of interesting material there. Did you watch any of the "Stand up to Cancer" on C4? I am afraid I couldn't, I am feeling far too negative about it all at the moment. That is just me, there is every reason for people to be positive.
I am off to Devon in the morning. I am not too sure of the emotional wisdom of it. We are staying at a place called "The Pines at Eastleigh". It is somewhere Janette foound when we har met again in 2004. It seemed like a good idea when I booked it, perhaps it will be.
One of my friends is a keen rambler so he will be introducing us to the delights of rambling, weather permitting of course. The forecast is ok and we have had a beautiful couple of days here in Northern Ireland.
Hope everyone has a good week.
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I had 12 jugs of hard cider in my cellar and was told by my wife to empty the contents down the sink, or else!! So I said I would.
I pulled the cork from the first jug and poured the contents down the sink, with the exception of one glass, which I drank. I pulled the cork from the second jug and did likewise, with the exception of one glass, which I drank. I then pulled the cork from the third jug and poured the cider down the sink, with the exception of one glass, which I drank.
I pulled the cork from the fourth sink and poured the jug down the glass, which I drank. I pulled the cork from the next jug and drank all but one sink of it, throwing the rest down the glass. I pulled the sink from the next glass and poured the cork from the jug. Then I corked the sink with the glass, jugged the drink and drank the pour.
When I had everything emptied, I steadied the house with one hand, counted the jugs, corks and glasses and sinks with the other, which were 29, and as the house came by, I counted them again and finally had all houses in one jug, which I drank.
I am not under the alcofluence of incohol as some thinkle peep I am, nor are I half so think as they drunk I am, but I fool so feelish I don’t know who is me, and the frunder I stand here the longer I get.
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EXCELLENT ARTICLE RE: TNBC - LIFESTYLE PRINCIPLES FOR RISK REDUCTION
http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html
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Thanks for that Dolce. good reading.
Hope you are doing good.
xxx
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Hello beachmd
I hope you are still viewing this thread. I have posted on here about surviving TNBC with or without BRCA1 and BRCA2. Do not keep picking up on the doom and gloom about TNBC. It will not do you any good.
As for what to do before starting chemo, it has been posted many times on this thread and Calling all TNS about the importance of getting a flu vaccine and a pneumonia vaccine. You need to do this because you will have a compromised immune system and be very vulnerable to infection.
You also need to see your dentist and get any dental work done before you start treatment. You cannot have dental treatment during chemo because of risks of infection.
During chemo, stay away from crowded places and avoid raw foods. Keep away from anyone who is likely to infect you with anything.
Hoping you are as well as can be expected.
Best wishes.
Sylvia x
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Hello everyone
Special hellos to bak94, chatterbox2012, BernieEllen and inspiredbydolce. Thank you for your posts. I shall be answering them later on today.
Best wishes
Sylvia xx
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Hello bak94
I was glad to know that you are back home. I was surprised that you spent only one night in the hospital. Did you have minimal invasive surgery, keyhole surgery? Otherwise I think you have to spend quite some time in hospital, at least here in the UK.
I do hope you will make a speedy recovery, but do not go overdoing things. I hope you will not have to see the hospital so much and not take too much in the way of medication. I suppose you will have to be on something like Arimidex for post-menopausal problems.
When you have recovered from all of this, are you going to resume some studies?
Make sure you relax as much as you can and try to laugh a lot.
Best wishes
Sylvia xxxx
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Hello Michael
I was glad to know that you had had a look at the Susan G Komen website and I agree that there is a lot of interesting information. I am always pleased to get some feedback when I post a link or some information, otherwise it is a bit discouraging.
I did not watch much of the Stand up to Cancer on channel 4. You may have missed the post from linali (Lindsay) in which she wrote about one of the programmes where they are forming choirs among cancer sufferers. She was impressed with it and they were trying to organise a choir at the centre which she attends. Apart from that, I think there were snippets about cancer just after the seven o'clock news and there were subliminal messages fleeting across the screen at other times. The main event was on Friday. I put the programme on and watched for ten minutes, but it was not my cup of tea. It was all very loud and noisy and not for me. I suppose the organisers will do anything as long as the money comes rolling in. If linali watched it, I am sure she will let us know.
I do not think breast cancer or any other cancer should be treated lightly and I prefer a more serious and more dignified approach to fund-raising for cancer. Of course, this is only my personal view.
I understand only too well that you may have negative feelings at the moment because of what happened to Janette. It is very early days since her death and you have to work through your grief. It is such a tragic story. You find Janette after all those years and then she is taken tragically away from you. Concentrate on the eight happy years that you had together.
I have been doing a lot of thinking about breast cancer and about what I personally think is needed. There is far too much emphasis on creating new and expensive drugs, which I think will always be lethal and not enough on preventing breast cancer in the first place, and particularly to concentrate on preventing metastases once you have been diagnosed with primary cancer.
There has to be a reason why breast cancer is becoming so common and why there is quite a lot of metastases. I find it disturbing when I read the headlines in the national press about the time bomb with breast cancer that will take off in 2040. I do not accept all this emphasis on an ageing population. Breast cancer is affecting too many young people and especially TNBC. I would appreciate your thoughts and feedback on any of this.
As I am writing this you are probably in Devon. I am wondering which route you chose to get here. Did you fly or go by sea?
I do hope you will have a nice time at the Pines at Eastleigh, but, as you say, it could be a bit of an emotional roller-coaster staying in a place where you have been with Janette. I hope it does go alright for you.
I cannot remember whether I told you that I spent a year in Bideford teaching French at the Community College. Bideford is not a bad little town. I left as I had remarried and Raymond wanted to go and live in Canada, so we went and stayed there seventeen years. We have been back to Bideford a few times since retiring to Exmouth nearly eleven years ago, but I always get strange feelings about leaving a job that I liked and the students with whom I had such a good rapport. Once when we went there I bumped into one of the other female teachers with whom I had taught French. It was a strange feeling. We have not been back in a while because we do not go very far now. Exeter and Sidmouth are where we go most often. I would be interested to know what you think about Bideford.
The countryside in North Devon is truly beautiful, especially around Torrington. Barnstaple is not bad either.
I hope you are not out rambling today with your friends. It is a truly miserable day here today and everyone to whom I have spoken has said they are feeling in low spirits.
Let us all know how your week goes. I find it spooky that we seem to be following in each others footsteps, Brentwood, Chelmsford, Bideford and I have also been to Northern Ireland. What next???
I would be very interested to know what you think of other forums, or social networking sites, with reference to TNBC. I do not use facebook or any other forums. I understand that there is a section on facebook for TNBC. What do you think of it? Do you think we are now going round in circles with information about TNBC? On the whole, if I Google it, the information tends to seem repetitive. Nothing new seems to appear. I think what I want to know most about is causes and prevention, not to mention possible cures. I feel there is a big gap there.
Wishing you all the very best and please let me know if I can help with your foundation.
Best wishes.
Sylvia
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Hello Bernie
I woke up this morning feeling very tired and a bit below par. I could not get to sleep last night.
I had a dental appointment and thought that the last thing I wanted to do was go for a dental check up! I looked at our thread and saw your joke and that made me laugh, especially when I read it out loud. I have just posted it off to a couple of friends.
I did go to the dentist's and had a nice chat with him in between treatments. He is a really nice man and always has soothing music on the radio from Classic FM. I started to feel a bit more cheerful, even though it is wet and overcast, a really gloomy day.
What have you been doing today? Have you been to the hospital yet about your lymphoedema problem?
All the very best.
Sylvia xxxx
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Hello InspiredbyDolce
Thank you for posting the link to the information about TNBC. It is very interesting and I hope others will find it so.
I think that everybody on these threads should have the message loud and clear now that we all need to be on a healthy diet and all need to keep active. Those people who are overweight need to lose it and get to their ideal weight and then eat healthily. We all know that with cancer there are no guarantees but at least we can control these aspects of our lifestyle.
I hope you are keeping well.
Best wishes
Sylvia xxxx
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Hello everybody
I just wanted to finish the snippets of information that I picked up from the Patricia Prijatel broadcast.
You will remember that she was answering questions that women had put to her.
She was asked the following. Can you survive TNBC? She said that most patients with non-metastatic TNBC do survive. I think we all know that the bigger challenge comes when the breast cancer spreads to other parts of the body or there is recurrence. She said that there were 80 trials in progress, mostly on metastatic TNBC. I think we urgently need some successful treatment to result from all this and above all we need something to stop metastases.
Another thing she said was that our cancers may be as unique as our DNA and that the term triple negative breast cancer was first used in medical literature in 2005. I was interested in that because I was diagnosed in June 2005 and that term was most definitely not used to me here in the UK. I found it myself.
She also mentioned the basal like characteristic of a lot of TN breast cancers, where the molecular is similar to ovarian cancer. This made me wonder whether any women are now being treated with drugs used for ovarian cancer rather than the ones we have had.
I think she said drugs for ovarian cancer and basal like ones are carboplatin, cisplatin and the taxanes.
She listed the long term side effects of chemotherapy. They were risk of MDS, risk of secondary tumours, and cardiac dysfunction.
The chemotherapy drug cyclophosphomide (Cytoxan) can cause osteoporosis.
I think everyone should have an ECG before and after chemotherapy to see how their heart is. I certainly was offered these and I was told that everything was normal.
I also think everyone should have a bone density scan known as a DEXA scan before and after treatment to see if they have developed osteoporosis. I had osteoporosis diagnosed after chemotherapy and also perhaps as a result of an over active parathyroid gland.
Also emphasised in this broadcast was the usual advice and information about low fat diets and exercise for overall good health and possibly to prevent a recurrence of TNBC.
I picked up on a few useful sites.
tnbcfoundation.org
hormonenegative.blogspot.co.uk/ This looks interesting.
That is all for now. It would be nice to have some feedback.
I do hope this week will be positive for all of you.
To Dulcie, we are all thinking of you.
Mumtobe, hoping all goes well tomorrow.
FernMF, hoping all is going well.
Sam52, I hope it is half term for you and that you will get some relaxation.
Iz_Lys_MumUK, hope you are well.
BuddhaWolf, what extraordinary things are you doing now?
Lint_Roller_Derby (Betty), have you decided to leave the forum and get on with life? I hope all is well with you and your daughter.
Best wishes to Maria_Malta, EnglishRose, beachmd, stupidboob, wiggy, christina124 and mccrimmon324.
That is all for now. Best wishes.
Sylvia xxxx
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Hello Sylvia
Just a quick post to let you know that ,yes, it is half-term, but that relaxation will not be on the cards for me as my father had another collapse last weekend.
I have already been up to see him in hospital twice since it happened and will go up again in a couple of days.He has now been moved to a local community hospital for rehabilitation.Each time this has happened, his mobility and cognitive abilities are affected, so I am very concerned how he will cope once he gets home again.
Thank you for your posts and, as always, wealth of information, even though I was not diagnosd with TNBC there is always something interesting to read.
Love,
Sam xx
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Thanks for asking about me Sylvia. I am embarking on DONE-WITH-CHEMO normalcy. I don't know what the new normal will be. I am three weeks out since my final round ....yipee!!!!! My legs are still weak and my three mile walk takes longer...but I got it done today . We are promised a good weather week so that will help. I am also beginning my diet to lose the ten+pounds I've gained in the past three months. I am motivated to be thinner by Christmas... and maybe I'll have enough hair by Christmas. Not holding my breath on that. Maybe by valentine's day. Thanks for all your good information filled posts.
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Hello sam52
I was so sorry to hear that your father has been having health problems and is in hospital. I know this must be of great concern to you and a very stressful time. I do hope he will make progress at the rehabilitation centre and will get good care. It is a real problem about elderly people living alone in their own homes. Even with carers coming in three times a day, which seems to be the best that can be obtained, it is not very good as they seem to whip in and out quite quickly. Please take care of yourself, especially when you are driving to see your father.
I hope you will manage to have a bit of time to yourself before you go back to school.
Thank you for your PM which I shall answer later.
Love
Sylvia xxxx
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Hello FernMF
It was nice to hear from you and I am glad to know that you are trying to get back to a normal routine. I think you are doing really well and you are to be congratulated on doing three mile walks. You seem to be a very determined person and I am sure you will soon lose the 10+ pounds you have gained. A lot of that could be fluid retention, which should come off easily. Being thinner by Christmas is a good goal. It is strange how people lose or gain weight during chemotherapy. I was lucky to have my weight remain completely normal.
Thank you for your kind words about the thread.
Wishing you all the very best.
Sylvia xxxx
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Hello Bernie
Thank you for the very colourful illustration about Halloween.
Do you do anything special to celebrate it? We do not really do anything.
It was a big event when we were in Canada and I used to prepare bags of chocolate etc. to give to the neighbourhood children when they came ringing the doorbell.
Best wishes
Sylvia xxxx
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Hello bak94,
What is going on that you say you are quitting a certain thread because you do not want to offend? I cannot imagine this as you have always been so polite and a great contributor to this thread. Keep in touch and do not upset yourself.
Best Wishes,
Sylvia.xxx
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Hello Everyone,
Just popping in to offer support to two fellow Brits who are going through chemotherapy.You can get through this. Some find it difficult and it can be slow and long, but there is light at the end of the tunnel.
Good luck to 52dee. I hope your oncologist will be able to help tomorrow and that you will soon be feeling better.
Good luck to EnglishRose. Your chemo journey will soon be at an end. I shall be thinking of you on Novemebr 21st when you have your last chemo.
Best wishes.
Sylvia xxxx
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Hi Sylvia
Thank you for your words of support.Currently that is all I have and I really appreciate it.0 -
Hope you all have a good weekend. I am going to Belgium today, back Monday.
thinking of you all.
: Astride his shiny new 125, Frank was thoroughly excited about going riding in the mountains for the first time. After going only a few miles, Frank was surprised to see what appeared to be a half-acre of brown fur just off the trail ahead. Recognizing it as a huge grizzly bear, Frank nailed the throttle hard, hoping to get by before the bear could react. The bear was too quick, though, and with one leap was totally blocking the trail. Frank had no choice but to stop.
"Now that you've disturbed my sleep", said the bear, "you have two choices. Either I maul you to death or we have sex." Frightened beyond belief, Frank decided to bend over.
Still sore a week later, Frank vowed revenge. Back to the cycle shop he went, where he traded in the 125 for a hot 250. Soon he was back on the mountain, heading down the trail. It wasn't long at all before he spotted the grizzly again, napping beside the trail. Feeling certain he had the necessary power this time, Frank nailed the throttle and shot ahead. But once again the bear was too quick, and again he blocked the trail. "That was a big mistake, Frank", said the bear. "But, you know the drill. Either I maul you to death or we have sex... rough sex." Fearful for his life, Frank again decided that it would be wise to comply.
This time it took weeks before Frank recovered enough to get around. But still outraged at the bear, he traded in the 250 and got the hottest 500 money could buy before heading back to the mountain. Now he could outrun the bear, and now he'd prove who was the master! And with the faster 500 under him, it took no time at all before he looked ahead and saw the huge grizzly again. Frank lowered his head, down shifted, and confidently nailed the throttle hard, rocketing ahead so quickly he was barely able to hang on. Incredibly, however, the bear was quicker still, and Frank had no choice but to come to a sliding halt in front of the bear now blocking the trail. A chill ran up his spine as he waited for the bear to speak.
"C'mon, Frank", said the bear. "Admit it. You don't come here to trail ride any more, do you?"0 -
Hi BernieEllen,
Have a fab trip to Belgium. I believe that they do great moules and fries and wonderful chocolate.
Loved the witchy pic. I was hoping that we would do Halloween at the centre because since my kids have grown up I miss the parties we gave, with cobwebs [fake] and giant spiders and eyeball buns and finger nail biscuits.
This year I'll be in Dublin with Leigh at his endriconology appt.
To everyone going through treatment we will send our healing light from our meditation at 11am tomorrow.
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Hello 52dee
Thank you for your post. I do so hope that something positive came out of your visit to the oncologist today and that you are feeling more reassured. I think in the UK we have to put questions to our oncologists, and in a way lead the dialogue as information is not always as forthcoming as it is in the US.
You have been through such a lot and survived it all, so try to keep positive and get through this.
I think you need to know whether your oncologist was just planning to give you FEC for six sessions and then nothing else. On this thread we have all read that the taxanes are very effective against TNBC and there are two, docetaxel (Taxotere) and paclitaxel (Taxol). I saw from your information about your ovarian cancer that you have already had docetaxel as part of your chemotherapy treatment. I would think you need to know whether you can have more of this ot whether you can have paclitaxel.
The main thing is not to be afraid to speak up and to be your own best advocate.
Since you are in London, you should have access to some of the best hospitals. Are you able to say where you are having treatment? I think the daughter of a friend of mine had good treatment in St Thomas's. Of course there is always the Royal Marsden and I have heard good things about the oncology department in Barts hospital, where I have a good friend who works in cardiology. You can always get a second opinion by having just a one off consultation privately if you think this will serve your cause. I think this still applies, but I am not sure.
I can understand that you have periods of feeling low. It is bad enough going through all this treatment once, without having to face it a second time.
It is so tragic what happened to your sisters. How old were they when all this happened?
Thinking of you and sending healing thoughts your way.
Best wishes
Sylvia xxxx
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Hello Bernie
Thank you for your post. Have a good trip to Belgium and tell us all about it when you get back.
I have been in the grounds here doing a lot of tidying up before winter sets in. It was quite cool but nice to be out in the fresh air.
Your joke about grizzly bears brought back some memories of Canada. When we lived there we went from Ottawa on holiday out west to British Columbia. Parts of it are unbelievably wild. Bears send a chill down my spine. We once went to put some litter in a litter bin on the open road, only to discover a bear cub inside. We made a hasty retreat to our car, knowing that the mother bear would not be far away. Another time, in Ottawa, a bear was walking along window shopping in the centre of Ottawa! The Australian tourists were delighted at this and were taking photographs and chasing it. The bear was quickly stunned by the authorities and taken away to the wilds. I was not at ease with wild life while in Canada. We had skunks, raccoons and wood chucks hanging around in Ottawa, not to mention chipmunks and black squirrels.
Do not forget to come back from Belium.
Best wishes.
Sylvia xxxx
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