Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Jacqueline 163,
Reading back posts I was just wondering whether you did go on that trial with the drug olaparib.
I would love to hear from you.
Best wishes,
Sylvia.
0 -
Hi Sylvia and others
I deeply sympathise with Mary who has lost her husband. I don't know what his illness was but I can feel how tragic it can be to lose loved one. I wish many happy days, weeks, months and years to come for you Mary and all the ladies here.
0 -
I asked this question on another tnbc thread too. Would please answer me if you have any information about it? Can the antidepressant Flouxitine be of any danger to us tnbc patients?
0 -
Hello HanTagh,
I saw that you were asking about the drug fluoxetine (brand names Oxactin, Prozac, Prozep). This drug is very well known here under the brand name Prozac and is also known as the happy pill.
I have looked up in my reference book that is published by the British Medical Association and is entitled New Guide to Medicines and Drugs – The complete home reference to over 2,500 medicines.
The general information about this drug is that it belongs to the group of anti-depressants called selective serotonin re-uptake inhibitors (SSRIs). It says these drugs tend to cause less sedation and have different side effects. It further says fluoxetine elevates mood, increases physical activity and restores interest in everyday pursuits.
Fluoxetine is broken down slowly and remains in the body for several weeks after treatment is stopped.
The drug is used to treat depression, to reduce binge-eating and purging activity (bulimia nervosa) and to treat obsessive-compulsive disorder.
In my book it further states that common side effects are headache/nervousness, insomnia/anxiety, nausea/diarrhoea. It also says avoid driving and other hazardous works until you have learned how fluoxetine affects you because the drug can cause drowsiness and can affect your judgement and coordination.
If a person experiences drowsiness, confusion, muscle cramps or seizures while taking this drug, they should be monitored for low sodium levels in the blood.
Again, in my opinion, this is the kind of thing you should discuss with your GP (general physician) or your medical team.
You must remember that we are not doctors on this thread, just people sharing their common experiences of having been diagnosed with breast cancer, specifically with triple negative receptors, gone through the treatment or going through the treatment etc. We are not supposed to give advice. Anything we say relates to our own experiences, such as side effects and how we chose to help them, or how our medical team told us how to help them. We are all different.
With reference to fluoxetine and how it may affect a person who has had breast cancer, with whatever receptors, that must come from a doctor.
I hope this helps and I hope you will continue to make good progress now that you have finished treatment and that you will live as normally as you can.
Wishing you all the best, Hanieh, and make the most of every day.
Sylvia xxxx
0 -
Hi Sylvia
I really appreciate your knowledge, survey and this sense of kindness to help others.
Actually it's been 4 weeks since my GP prescribed this medicine for my severe stomachachs and backaches, which after having ultra sound, blood test, and being examined by gynecologist , found no underlying physical cause.
Yet, as I was searching for some information about this drug I found out it interferes with tomoxifen so women with positive receptors are not allowed to take it. I got somhow anxious about taking this drug and could not find any information about it in regard to TNBC. Being on Norooz Vacations I don't have any access to my doctors so I asked here if anyone had any information about it.
Now all my pains have subsided and I feel generally better , yet a bit worried about this drug.
Best wishes
Hanieh
0 -
Hello HanTagh
Thank you for your post. I was very interested in what you said about not taking Prozac if you are on tamoxifen, as it it interferes with tamoxifen. That is useful information for patients with hormonal breast cancer.
I suppose your doctor may have prescribed it for you thinking that your stomach problems may have been caused by anxiety. I hope you are feeling better.
Try to laugh as much as you can. Laughter is the best medicine.
I hope you have a good weekend and that you do something relaxing. Try always to look on the best side of life.
Fond thoughts.
Sylvia xxxx
0 -
Hello everyone,
I have just received the Spring issue (no. 23) of Vita magazine. This is the free breast cancer magazine that I have been reading for many years. It is worth signing up for or reading on line at www.vita.org.uk.
In this issue there are many interesting topics under the following headings:
Page 6: Top make up tips.
Page 8: Facing life after treatment together.
Page 10: Raising awareness in Asian communities.
Page 12: Diet after breast cancer.
Page 18: You tell us what happened when treatment ended.
Under the heading Real Lives
Page 11: Facing our family history.
Page 21: Susannah's fashion show story.
Under the heading Your health and wellbeing
Page 13: Laughtercise
Page 14: What is palliative care?
Page 16: Your questions answered.
Page 20: Touch Surgery app.
Page 22: Healthy salad recipes.
Under the heading Regulars
Page 3: Your letters, e-mails and tweets.
Page 4: News and views.
Page 23: Fund-raising.
Page 24: News from our corporate partners.
Page 25: breast cancer care services.
I find this magazine is very easy to read and has a very nice format with lots of photos of people going through cancer and their experiences.
This is an excellent magazine for the newly diagnosed, those going through treatment for the first or second time and a great magazine for support. There are lots of links to information for every aspect of breast cancer. Please try to read this magazine.
I hope you are having a good weekend. Here in Exmouth it is wet, windy and dreary!
If you want to keep the thread going I hope to hear from some of you.
Best wishes.
Sylvia
0 -
Hi Sylvia
You and your friendship are among the best in my life. Thanks a lot for every thing.
0 -
Hello Hanieh,
Thank you for your very kind words. Knowing that I can help makes everything worthwhile.
I do hope everything will be fine for you and that you will go on to have that other baby that you want. Life does get back to normal and you must hang on to that thought.
Yesterday I was reading some of the other threads to keep up to date and I saw a post from someone who was having problems and was fourteen weeks pregnant. Did you see that post? I think it must have been on one of the threads recently created.
Here in Exmouth the schools broke up on Friday and I do hope the weather will improve for the children. This coming weekend is Easter Sunday. The schools have three weeks holiday and the children will be looking forward to chocolate Easter eggs on Easter Sunday.
Sending you fond thoughts.
Sylvia xxxx
0 -
Hi maryna8
I am sorry to hear of the loss of your husband, I know how difficult it is as I lost my wife to TNBC three years ago. Personally I cannot say that time has helped it has just made it different. I hope that makes sense. I suppose each of us rationalise loss differently.
Best wishes.
Michael
0 -
Hi Sylvia
I have been missing for a couple of weeks but wondered if you had seen this story in the media.
http://www.rte.ie/news/2015/0320/688364-cancer/
Michael
0 -
Hello Michael,
Nice to see you back. I shall look up your link later today as I am rather busy this morning.
Best wishes.
Sylvia
0 -
Hello Michael
I have just been trying to listen and/or watch the link you gave me. It was not very satisfactory as it failed half way through. From what I was able to understand, this is a test only for hormonal sensitive breast cancer in which there is no lymph node involvement. As I understand the test was to detect some kind of oncogene.
Since I did not manage to hear it all, I am supposing that if this oncogene (or genes) is detected, then it means you are more likely to have recurrence and if you do not have it you are not. Is this how you understand it?
I have read over the years American women posting about having had some kind of oncogene test, so, as was stated on the link, this is not a new test. It was around in the US in 2005 then disappeared from the news and has suddenly popped up again and has been used in Ireland.
What exactly is the test?
I do not know what to think because if you are told on diagnosis that you have a kind of hormonal breast cancer that is likely to recur, where is that going to send your mind, even if you get chemotherapy.
If you do not have this oncogene and you are told your breast cancer is not likely to return, and you do not need chemotherapy, are you going to be worried about not having had chemotherapy?
What is the position of your medical team if you are not given chemotherapy and your breast cancer comes back?
I would value your opinion.
I have two friends here who had breast cancer, hormonal, no node involvement and just had lumpectomies, radiotherapy, some tamoxifen and just check ups. Both are still in the clear, one seven years out and the other five years out.
I hope to hear from you, as you may have been able to hear the whole of the interview.
How is everything with you? Are you following the General Election and the debates, so-called!
I am following it all but think it is all going to be negative and name calling. Did you see Cameron and Miliband being questioned separately by Paxman and then separately answering questions from an audience? If so, what did you think?
Sending best wishes your way.
Sylvia.
0 -
Han Tagh
Thank you for your kind words of sympathy and caring.
My husband had several progressive diseases: COPD, and later congestive heart disease, and kidney failure. He lived with them for some years, and they took more of a toll on him as time went by. In January of 2014 things really started to go downhill for him, oddly enough that is the same month I discovered my breast tumor. So we had a very rocky 2014, and he died in February 2015, not quite 2 months ago. We were married almost 28 years ago, and since he got quite homebound last fall we were together 24-7. It is a big adjustment for me but I do understand how ill he was.
I have found comfort here too, both for my cancer and in his loss. I am so grateful to Sylvia for starting this thread, I don't think there are many like her around. She is so giving of her time, inspiration and information.
Thanks again,
See you on the thread,
Mary
0 -
Mary
I can feel how hard it is for you to cope with all this and what a rough time you had. But the strength that you achieved through all this can lead you to better days. I m sure you will find comfort in upcoming days and years as God is always here .
0 -
Mary
I can feel how hard it is for you to cope with all this and what a rough time you had. But the strength that you achieved through all this can lead you to better days. I m sure you will find comfort in upcoming days and years as God is always here .
0 -
Hello Mary,
I just wanted to say thank you for your very kind words and say that I am only too glad to help in any way I can. I do hope you are managing everything on a daily basis. My heart goes out to you, Michael and Sue wirral. Please keep in touch.
Fond thoughts, Sylvia xxx.
0 -
Good morning everybody! Just popping in to give you an update. Radiation has been finished now for about four weeks but I ache all over and I'm still aching I even had a scan on my ovaries because I was so worried about the ache there but that came back clear, however it did show that my ovaries have shrivelled up some what, this is probably due to the chemotherapy.
Even the knuckles in my fingers and my wrists hurt when I wake up in the morning, did anyone else have this and how long does it last for? I feel like a old woman and I'm not even 40!
I will be having a consultation with my gynaecologist at the end of April with a view to taking out my ovaries and fallopian tubes because of this gene I have and my brothers and sisters and cousins are all getting tested for it too so at least something good can come out of something awful.
I do feel very positive, I think the further away from diagnosis I get the better I see my future. I know that there are a lots of new people on this thread now, not long after diagnosis you feel so despondent but if it helps you, my story is that it gets easier. I am nearly a year from diagnosis now and have finished the aggressive treatments, now concentrating on getting fit, plenty of exercise and eating healthily.
All being well I hope to go back to work at the beginning of July but I Will only be going back two days a week, I used to be head of maths but I've given up all my management responsibilities and now just want to concentrate on me and my family.
I will try and logon more often and keep up-to-date with you all and support the people who are now going through their treatments.
Love, Marymargaret
0 -
Also forgot to let you know Sylvia that I am going on the trial for Oluparib,just waiting to hear from The lead doctor. I have done my own research on it and it looks quite exciting it worked really well on the lung cancer trials. Praying I don't get the placebo, Knowing my luck I will.
0 -
Michael,
Thank you so much for reaching out in sympathy. I am also so sorry for your loss. I assume you were your wife's caregiver when she needed it. I was too; last year I was both caregiver and patient after being diagnosed with TNBC in January 2014. We had a rough year, and he passed away in February 2015. I have found I not only miss him very much, but I feel as though I have lost my purpose. I think keeping him going had become my mission, it also kept my mind off my own troubles.
Now I am trying to get back into better physical shape and get stronger. Am still dealing with an injured shoulder that holds me back from many activities, even my driving is affected. I do find myself busy during the days, but the nights are different. Then the house is quiet and lonely. I live in a rural area, so not much to do at night.
I think it is very giving of you to keep coming here and posting and offering links of information. And you probably find comfort in it too. I look forward to seeing you here, and am glad you are moving on with your life, even though you will never forget her and your life together.
Best wishes to you!
Mary
0 -
Hi just popping in for a quick update on everyone. Marymargarethope I am pleased you are starting to feel more positive and maryna8 I hope you are getting along OK. It is so hard for you what with this disease as well and I hope your lovely memories of happier times will be a comfort. My thoughts are with you Michael.
Sylvia thanks for being there for us all and HanTagh its lovely that you have joined our thread and welcome to you
It is coming up to 2 years this June since i lost Colin and this time of year brings the memories of when he was becoming ill but I have my photos and memories and am starting to go on holidays again. I have a trip to Florence with my son planned on 17th of this month and then 5 days away with a friend to Poland on 1st May so nice things to look forward to. I have stopped my antidepressants now following discussion with my psychiatrist at the cancer centre, they were making me pile on the weight which is depressing in itself!!
Love and best wishes to you all, Sue xx
0 -
Hello Marymargarethope (Mary),
It was so nice to hear from you. I was sorry to read that you are aching all over for weeks after your radiotherapy finished. Your body has been through great trauma and upheaval with your cancer treatment so it will take time for it to get back to normal. Give it time for your immune system to build up strength and help it along with healthy food, some relaxing walks, and avoiding negative stress.
I was glad to know that the scan on your ovaries came back clear. I would think the cancer treatment would probably affect the ovaries because with pre-menopausal women the treatment often seems to stop periods, but they do come back with time. Just try to relax as much as you can, although I can understand that, with four children, you lead a busy life.
The cancer treatment does affect your bones and nerves, so that could be why your knuckles and wrists are hurting. I think that could probably last for some time. I have peripheral neuropathy in the soles of my feet and I have been told it was caused by the chemotherapy drug docetaxel (Taxotere) and that it is permanent. I was told this by my oncologist, GP and podiatrist. It is a strange feeling of numbness, roughness and just the feet not feeling right. I just keep my feet well moisturised. I understand this can also happen with the hands but I am fine in that respect. I sometimes find that palms of my hands go very red, not very often but that was happening during chemotherapy. I think all this is described as hand and feet syndrome. I also have osteoporosis which I think was caused mainly by the cancer treatment. I do think it is a good idea for all patients diagnosed with breast cancer to ask for a bone density scan – DEXA scan – to find out the state of their bones before treatment and then one post treatment.
Please let us know how you get on with your gynaecologist at the end of April. I think a lot of young women with the faulty gene decide to go this route for peace of mind.
It will be interesting to find out what other family members have the gene and what their options are. Will they be having blood tests? I ask this because I saw posts on other threads from American women who were having this test done through saliva. I do think we should all be tested for faulty genes. Older women do not get this test here because we are told it affects only younger women, but I think there are always exceptions.
It is good to know that you are concentrating on getting fit after treatment. That is the one thing we can all do to help ourselves.
Make the most of the next three months to get yourself strong again so that you are ready for work. It is a good idea to go back gently. I was interested to read that you used to be head of maths, so I am assuming you are a teacher. This puts you under a lot of stress. I cannot believe what I am reading about schools these days, the lack of discipline and the number of teachers that are leaving the profession. I do not know where we are going with education.
I was very interested to know that you are going on the trial for olaparib (Brand name Lynparza), which is a PARP inhibitor. I can understand that you hope to get the drug and not the placebo. I do wonder how this works, because I think you are not supposed to know whether you have the drug or the placebo, but I am sure you must know by the side effects you experience.
Be sure to keep us informed.
Fond thoughts.
Sylvia xxxx
0 -
Hello Suewirral (Sue),
I was so glad to read your post. I get very concerned when everything goes quiet and wonder whether everyone is alright. It is so good that you, Maryna8 and Michael can come together on this thread to comfort one another as you adapt to life without your partners in life. I think it must be the hardest thing to do.
Thank you for your kind words about the thread and your welcome to HanTagh. I am sure that your welcome will mean a lot to her.
You will be in my thoughts as it comes up to two years since Colin died. I know from the neighbours in my apartment complex how difficult such times are. We have six women in our apartment complex whose partners have died, and three men, and they all say how difficult life is, especially on birthdays, anniversaries and other special days. Somehow you have to find motivation to continue, but I know I would find life very difficult without Raymond.
I am glad to know you have some enjoyable trips planned, so you have something to look forward to in the weeks ahead. Be sure to let us know all about Florence and Poland.
I was glad to know that you have stopped your anti-depressants as I do read negative things about them. Piling on weight is definitely not good for you. I do wonder why medication makes you put on weight. A cousin of mine developed weight problems and all sorts of nasty things on steroids. She took herself off them and feels fine.
Look after yourself and take care.
Fond thoughts.
Sylvia xxxx
0 -
Hi Sylvia,
I should have posted sooner especially to support those going through treatment. It is a time of uncertainty and one where there are many questions with no definite answers.
A very unsettling feeling.
I have had a busy few months and whilst visiting my sister for her 50th birthday earlier this year I became unwell. Long story short I was taken by ambulance to Basildon hospital with chest pains. Everyone was marvellous and after a day of tests I was discharged. I have had further tests here and all clear and
I am waiting for bloods to come back to check on other reasons.
Kerry's baby is due in a couple of weeks. She is very big and has pain and so we are all just counting the days now.
She will come to stay for a while after the birth.
The centre is as busy as ever and there is some building work going on to create a garden and small treatment area
0 -
Hi Sue
Thanks a lot for your warm welcome. As Sylvia said it means a lot to me and I am extremely happy to find so nice friends and lovely sisters here. I hope to hear just good news from all here and to pass many many years NED altogether.
0 -
Hello linali (Lindsay),
I was so pleased to find you back on the thread. It has been quiet but I am so glad to see our close group coming together again as we get to the end of the first quarter of 2015 and head into the biggest break since Christmas and the New Year.
Most of the new group that formed months ago have now finished treatment and are heading to the next stage of our journey when we start the regular three-monthly check ups, progress to six-monthly and then to once a year. That is what it has been like for me, so if it has changed, I am sure others will let me know.
I was interested to know that you had been in England visiting your sister for her 50th birthday. I did not realise you had a sister in Essex, or that is what I am assuming since you ended up at Basildon Hospital. I seem to remember that you visited a sister in the north west of England. Do you have two sisters?
I was sorry to read that you had become unwell while visiting your sister and that you had to be taken by ambulance to Basildon Hospital with chest pains. It must have been very frightening for you.
I was glad to know that you were well treated at Basildon Hospital and that you had a day of tests to try to find out what was wrong. I was also glad to know that you had had tests back hope in Ireland and that all was clear. Have you any idea what might have caused the chest pains? Were you under stress?
Raymond and I used to live in Essex and we were not that far from Basildon Hospital, but we never actually went there. We did go to the hospice next door to support a friend who was working there. We were very impressed with it. In fact, it was in this hospice that we sat and watched the funeral of Diana. We also went there to support fund raising occasions.
I do hope you will have good results from your blood tests.
I do hope all will go well with Kerry for the birth of her baby. Do you know the sex? How is Oskar and what does he think about having a new baby in the family?
I hope all is well with all the family.
I was glad to know that the centre is busy because these centres for cancer patients are so important. I like the idea of a garden and a small treatment area.
Life continues much the same here in Exmouth. It has been very windy and cold but today is much nicer. It would be so nice to have some warmer weather. It is very busy in the town and on the seafront because the schools are on holiday and the Sandy Bay (Devon Cliffs) holiday resort opened fully last weekend. It can swell the population by 18,000. We also have a brand new Premier Inn on the seafront.
Here in England all the news is mainly about the forthcoming election on May 7th. Are you getting much news about it? I am following it all and do hope it will not be another coalition government, although the polls keep saying it will be. I am very concerned that we are fast losing our National Health Service.
Keep in touch and let us know about the new baby.
We have not heard from breastcancerhusband (Tom) in a while, so I am wondering how things are and whether the baby has been born.
I hope you have a good Easter holiday. Have you been making hot-cross buns? I bet Oskar is looking forward to an Easter egg!
Fond thoughts.
Sylvia xxxx
0 -
Hello everyone,
I just wanted to wish everyone posting or viewing in the UK a Happy Easter Weekend. I hope you all get to relax and do something you enjoy.
Outside of the UK I am not sure whether you get both Friday and Monday as holidays. Whatever it is, enjoy!
I would love to hear from Tom, Jackpot (Gill), adagio, InspiredbyDolce and especially Carolben in South Africa.
To bak94, congratulations on reaching four years and NED. I remember how you posted regularly on here when you were going through treatment and had plenty of ups and downs. You need to be especially congratulated because you have come through all of this and I remember it was your second time around after eight years in the clear. Keep well and happy.
Fond thoughts.
Sylvia xxxx
0 -
Hi Sylvia and others
Happy Easter to all. Here in Iran it's our last day of new year vacation and tomorrow is officially our first workday. Yesterday most Iranians celebrated the last day of Norooz in the countrysides or parks. It was really enjoyable for me to be with some in laws in the countryside. I wish all the people around the world have calm and peace with the coming of spring and enjoy their lives to the fullest.
Love
Hanieh
0 -
0 -
Hi Sylvia
To be honest I am not sure what the test is. Here in s a link to the developer web site which may explain it further. To me it appears to measure the likelihood of recurrence and if it appears to indicate a low risk then the option of no chemotherapy is given.
As far as the responsibilities of the medical team goes, I suppose that they can only offer advice on the knowledge and facts at any given time. I think the days of an individual doctor or team of doctors tailoring a treatment plan are largely over. I think protocols are pretty standard everywhere; which I think, on the whole is a good thing.
I hope you are enjoying the Easter weekend, the weather is still pretty miserable here. I it most of my winter coats away two weeks ago and it has been dire weather since 😠
Michael
0
