Calling all triple negative breast cancer patients in the UK
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Hello InspiredbyDolce (Debra)
I get my nuts and seeds from one of our natural food stores and/or our local supermarket. I get organic if I can and always try to get organic almonds as they are much softer to eat. I do not count fat grams as I know nuts provide healthy oils and lots of vitamins and minerals. I have china containers for these and keep them in the refrigerator. I have almonds, Brazils, cashews, hazelnuts, pecans, pistachios and walnuts. I have a mixture of them each week and vary the nuts daily. I emphasise almonds, Brazils ads walnuts. Like this I know I am getting a mixture of everything. I do not put on weight at all and I have read that people eating nuts for some reason do not put on weight. I do not eat great quantities of them. I am not a great believer in low fat diets, as the body needs fat, but not the unhealthy fat you find in junk food, which has no part in my daily nutrition. I also have my bitter apricot kernels every day (about 15) and from time to time some peanuts in the shell for B vitamins and mono-unsaturated fat.
Thank you for letting me know about the new links. I do often read the TNBC thread but sometimes find it a bit overwhelming because it is big and I do get disheartened hearing of so many new diagnoses. I shall certainly have a look at Dr Soon-Shiong's interview with Dr Sanjay Gupta on 60 Minutes. I used to enjoy watching 60 Minutes when I lived in Canada.
I was interested to know that Dr Soon-Shiong invented the cancer drug Abraxane.
I hope you have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Suewirral,
I was so glad to know that you had had good news for your daughter. The two of you must be overjoyed.
Enjoy your weekend.
Fond thoughts.
Sylvia xxxx
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wonderful news Sue!
xxxxx
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Hello Inspired bt Dolcie(Debra),
I have just read JenJens link on her post from December 8th and I found it most interesting. I am going to reread it all again tomorrow. Thank you for letting me know about it.
Best wishes,
Sylvia.xxxx
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Hi Tom, I remember only too well how I felt when my hair fell out and initially only wore scarves. The website annabandana has some great headwear that is elasticated so no fiddly tying scarves and has some nice winter hats too.
I had my chemo starting last January and if you have to have chemo I guess the winter is as good a time as any as everyone's head is covered in hats and hoods anyway. I did get used to wearing my wig after a while. Your wife will get a prescription to out towards her wig ( I take it you live in the UK Tom?) which is over £100. I also bought a couple of cheaper wigs online and really like one of my cheaper ones which I usually wear for work. I know these things only deal with the practicals and it will be hard emotionally for your wife losing her hair. I suppose I got through that part by trying to reminding myself that this is only temporary. I remember thinking that if anyone else tells me I have a nice shaped head...... grrr.
Love to you and your wife and family Tom, Sue xx
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Thanks Jill Sylvia and Tom for your kind words xx
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Hi Sylvia/Mary Margaret and other Ladies,
I apologise for not posting more regularly but so much going on since my last posting. My aunt had breast cancer 7 years ago and since 2 years ago has been fighting lung cancer (smoked all her days). There are lumps popping up everywhere now and she is not understanding her position - docs have told her she will not get anymore chemo. When I speak with her or visit I come back feeling very negative and then find this interrupts my sleep.
Anyway I got through the last 2 sessions of the docetaxel with my eyebrows, eye lashes and 6 nails falling out. I had my surgery on the 6th November (mastectomy) with only 1 overnight stay in hospital. I left with a drain in on the Friday and had it removed on the Monday. I had to attend the hospital 4/5 times for them to drain the wound as there was fluid built up. I recovered well but surgeon told me that the breast tissue was analysed and the chemo did not eradicate the cancer as well as they had hoped. He dismissed giving me more chemo explaining that if there was a re-occurance then that would reduce my chances of receiving chemo next time. This upset me a little - I immediately thought that there was something he was not telling me. I am being quite religious in doing my exercises to get normal movement back into my arm.
Since then I have been thinking a bit too much about the cancer coming back. I am doing all I can to change my diet eg buying organic, eliminating sugar and milk, making smoothies with bio yogurt and eating plenty of dark fruit and veg - looking after my immune system.
I am now ready to start my radiotherapy on 29th December for 3 weeks. My hair began to grow back after the fourth chemo. I like to sit with my head bare as much as possible, but with the weather turning colder it can feel a bit draughtly.
When I had my appointment with the onc she asked if I would be interested in taking part in a Clinical Trial for a drug called olaparib - the study is whether giving olaparib to patients, once they have finished all standard anti-cancer treatments, can reduce reoccurance. I have still to find out if I am suitable or not, ie if I have the BRCA gene. My family history consists of my great grandmother (breast cancer), my mum (womb cancer) and my aunt (breast and now lung).
Glad to be finished with the chemo though as I felt that was the worst part of my treatment so far - apparently the radiotherapy is a skoosh compared to the chemo. I also have to go for another CT scan on the 24th Dec.
Have tried to keep my post as condensed as possible. Also have a lot of catching up to do on this thread.
Mary Margaret hope you are not feeling too bad. Maybe wait until after Christmas before going for surgery and enjoy Christmas with the kids.
Take care everyone and stay positive.
Jacqueline
xx
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Hello Jacqueline,
I was so glad to hear from you as I have been concerned about you. I was so sorry to read all that you have been going through and I do hope that things will get better for you. Please come here and talk to us when things are getting to you.
I was sorry to read about your aunt and I am sure the doctors will be doing all they can. Do not compare yourself to her as all our breast cancers are different and individual. I was sorry to hear that having survived breast cancer for seven years that she now has lung cancer.Is this primary lung cancer that has developed independenly of the breast cancer or is it metastatic and has developed from the breast cancer of seven years ago. We all know that cancer cells can lie dormant in the body for years and then pop up to surprise us. Do you know what kind of breast cancer your aunt had, what receptor status, and how old she was at the time. I am surprised that your aunt has continued to smoke. It will not have helped her at all.
I shall write more in a minute,
Loving thoughts
Sylvia.xxxx
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Hello Jacqueline again,
I read with interest what you said about your treatment so far. I was wondering how many of the planned treatments you had. You got through the first lot, so I was wondering how many of the Taxotere treatments you missed.Try not to worry too much as the radiotherapy is used to mop up any stray cells. Please do not be afraid to ask your consultant questions to make sure you are getting the absolutely best treatment. How much radiotherapy are you getting and are you getting the boosters ones integrated in to that? I cannot see why you should not be able to have the rest of the chemotheapy you have missed, if you did not get it all first time around.During my own treatment, the chemotherapy shrunk the tumour a little, but it by no means made it disappear completely.I had the chemotherapy before surgery and at the checkup after each session the tumour was measured to see how much it was shrinking.I had a mastectomy after I had recovered from the chemotherapy. My oncologist told me that after radiotherapy I could have more chemotherapy if I needed it.You have to be in control of your treatment and your own best advocate. Keep telling yourself that you are going to be fine and that you are going to get through this. We are all here for you.
Fond thoughts, Sylvia.xxxx
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Hello Jaqueline,
I am reading your post in bits as there is a lot to take in. I was glad to know that you are doing all your exercises to keep lymphedema at bay as that can be a nuisance. Keep up the good work.
You are doing a great job with your diet as that is one of the things that we can control along with exercise. What is more difficult is trying to protects ourselves from the toxins in our everyday environment, both inside and out,and those in our toiletries etc.We can only try to do our best.
I was wondering how old you are and how old your aunt was when diagnosed. We all know that breat cancer with triple negative receptors tend to affect a greater number of younger women. If it will give you peace of mind ask for the genetic test to detect the fauly BRCA1 or BRCA2 gene.Apparently the younger a person is at diagnosis the more likely they are to have these faulty genes. Let us know how you get on.
Thinking of you,
Sylvia.xxx
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Hello Jacqueline,
I was most intrested to know about the possibilty you have of going on a trial if you turn out to have one of the faulty genes, Try to deal with one thing at a time as you have a lot going on and you can get overwhelmed. Take one thing at a time. Radiotherapy is fast approaching, so you might want to get this out of the way first and have a genetics appointment set up for straight after that. I think we all find radiotherapy easier than chemotherapy, but it is not a walk in the park and you can get very tired and will still need to take it very easy. The most tiring part is that you have to go for treatment evey day for five days with a break at the weekend. The actual treatment is over in minutes.You will have an appointment prior to starting during which you will be placed on a prototype of the radiotherapy machine and pinpoints will be made on exactly the place that will get the radiation. There is nothing of which to be afraid. You will be told how to look after your skin and what to do and what not to do.
I was interested to read about you family members and cancer. My maternal grandmother died of metastatic breast cancer back in 1955 at the age of seventy. My mother and her sister had no cancer and I am the first female of the next generation to have had breast cancer. This did not qualify me for genetic testing nor did the age at which I developed breast cancer. I have three female cousins on my mother's side, but so far they are fine.
That is about all for now.Try to relax,get some sleep, and look after yourself. We are all here for you.
Warm thoughts, Sylvia.xxx
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Hello Everyone,
I am just popping in tosat that I hope you all had a happy weekend and that the weekend ahead will be good for you. Be strong whatever the challenges. You can get through this. If you are viewing Marymargarethope please let us know all is well and that you are busy preparing for Christmas.
Best wishes to all you fine people.
Sylvia xxxx.
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hi Sylvia
I've had my pre op ready for my surgery and it went ok, they only moment of concern was my blood test my blood count was only 8.7 which is extremely low, I don't think it went that low during chemo but I told them I feel ok so surgery is still going ahead as planned
I was sent round to admissions and even though I already made it clear I wanted a appt after Xmas they tried to book me in for the 23rd dec...it would have meant I would probably be in hospital for Xmas day so I declined that date and accepted another for the 5th of jan,
So hopefully this will fix all the problems I'm having at the moment and this will be the end of operations and hospitals for me...at least for a while any way, so I'm going to try and have a great Xmas and new year and worry about the op nearer the time
Take care
Gill x
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Hello Jackpot (Gill)
Thank you for keeping us informed.
I think you have made the right decision about your surgery. You do not want all that just before Christmas.
I shall be thinking of you on January 5th when you have your surgery.
In the meantime, concentrate on making sure you are strong and ready for the surgery and keep happy with your family over Christmas and the New Year.
Let me know how you enjoy the John Bishop show.
At the hospital were you given any advice about how to get your blood count up?
I hope all si still well with your niece.
Do you make a big thing of Christmas in your family?
I am not at all religous and do not have much in the way of family now, so Christmas is a quiet time for Raymond and me. What I wish for most is peace in the world as the world seems upside down to me at the moment. For this country I wish for an end to poverty, inequality and injustice. Only then do I feel that this country can hold its head up high.
Love
Sylvia xxxx
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Hello Marymargarethope,
I do hope all is well. I think if i have remembered correctly that you are having a mastectomy tomorrow December 17th. If so, I do hope all goes well, that you will not be in hospital for long and that you will be able to have a lovely Christmas with your children and husband.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Thoughts please!!!
https://www.clinicaltrials.gov/ct2/show/results/NCT00528567?sect=Xjci0156#outcome13
This was just sent to me, its some info on a clinical trial being carried out by Roche on a drug called Avastin, whcih blocks angiogenesis (growth of new blood vessels). Its called the BEATRICE study and is examining Avastin being given alongside chemo and then afterwards. The trial began in 2007 and is coming to an end next year I believe.
This is for TNBC - so all the data is on women with TNBC.
If you click on the link it gives the study results to date. What I've just found interesting is the numbers being thrown up. Now I may not have read this correctly, so will take some time to go through fully, but if you scroll down to "outcome measures" (blue arrow, text boxes) there are some outcome measures you can view.
Look at outcome measure 2 - No. of patients with invasive disease free survival events. This has a follow up of up to 49 months (just over 4 years), look at the percentage of participants without events - 85%
Measured outcome 6 - Overall survival. Again a follow up of up to 49 months. Percentage without an event over 90%
The study still needs to end, but those are impressive survival figures. Remember a lot of the studies published on TNBC are with old data, with older treatment regimes. This study began in 2007 and won't be published until at least next year. But compare these figures to older studies, these are even better survival odds!
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Hi BCHusband,
I havent read the link yet but about 3 years ago I was at a cancer information day and one of the speakers was from the breast cancer research dept in galway and I asked her about avastin.
As far as I can remember she said at that time that it the evidence wasnt too encouraging and I think that they had stopped exploring that avenue for TNBC.I did ask about any further studies or trials here as she was focusing on TNBC but heard nothing.
I will read the link later.
Interestingly we have a big Roche plant 9 miles away and they have given lots of support both financially and with voluntary work on building and renovation projects.
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Hi Lindsay
I think from looking at the study results thus far it isn't really doing much!
What stood out for me was the survival rates regardless of whether it was used or not.
Tom
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Hello Tom,
Thank you for sending the link, which I have just read. Reading through it all I cannot say that I was very impressed with this drug. The marginal benefits are outweighed by the side effects, particularly the cardiovascular ones which are already nasty side effects of the two taxanes commonly given for breast cancer. I agree with Lindsay in what she said about Avastin. I read quite sometime ago that bevacizumab (brand name Avastin) was disappointing. It is a monoclonal antibody and I did not think it was being used any more. I suppose if there are supplies around, somehow it will be used. I think with breast cancer and cancer in general the future lies in prevention and not more and more toxic cocktails of drugs.
All I can say is that I would not take it. You may survive for a few years but what quality of life have you got and you could well die of heart disease brought on by the drugs and no doubt you will be being plied with drugs to treat your heart damage.
I also think that the women involved may have survived anyway. We have to remember that a lot of the women with TNBC survive. I have survived nine and a half years with no drugs since I finished treatment.
How are things going with your wife? How is your little girl? How are you?
I do hope you have an enjoyable Christmas.
Best wishes.
Sylvia
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Hello Michael,
We have not heard from you in a while and I am posting to say that I hope all is well with you. I know that Christmas is probably a difficult time for you and that your thoughts will turn to your wife Janette. How are things going with the Janette Collins Foundation that you set up?
What are your plans for Christmas? Are you going back to Essex or staying in Northern Ireland?
I do hope all is well with your lymphoma and that you are taking good care of yourself.
Raymond and I are reading a book that he discovered in Waterstones. It is entitled "P53, the Gene that Cracked the Cancer Code" by Sue Armstrong, published by Bloomsbury 2014. It caught our eye because back in 2005/6 when I asked a consultant about what might have caused my breast cancer, she said something about the turning off of the P53 gene by a process called methylation, which allowed cancer to proliferate. It was about the same time that my oncologist, when talking to me, said that tumours mutate and that my TNBC had not necessarily started as that. It was also about that time that I started reading about apoptosis and angiogenesis.
I should think that with Christmas just a week away, most of our friends are turning their thoughts to this and putting cancer in the background, but we do have to think of those going through treatment, such as Marymargarethope, the wife of breastcancerhusband, Jacqueline1963, and Jackpot (Gill) facing a hysterectomy after Christmas and of course Suewirral with all that she has been through.
I hope everybody gets through Christmas and can face the New Year with optimism.
Best wishes.
Sylvia
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Hi Sylvia
Hope you are doing well.
Things are going ok, well as ok as they can be. My wife has had the second chemo dose and is now recovering. She hasn't been too bad, just very tired. Her hair is falling out fast now, but she is in quite good spirits. She has got a wig and our little girl has been told that mummy's hair is going to fall out and that this just sometimes happens, but it will grow back. Our little one has been wearing the wig and my wife has found it very funny. I guess if you can't laugh.......!!
I'm just making sure she is resting loads, but at the sametime we're keeping active. Once we're into the last stages of pregnancy and she is on Taxol I think she will be wiped out.
Baby is doing ok. The scan today showed that everything is going normally. Although the placenta is quite low down, but that's not a problem right now and it should move up soon. Baby is two days below where he should be, but within the normal heathly range, so we're not worried. He's moving lots which is good.
My little one is simply lovely, (she takes after her mum!). She is providing us with lots of entertainment. Its hard to be down with a 3 year old running around getting excitied about Christmas.
I'm ok i guess. Trying to keep busy at work and keep spirits up at home. A collegue said to me this week; "you're in the eye of the storm now." I agree with him, just need to get through treatment and birth and finish treatment then move on as much as we can.
With regard to the link I posted, i should have explained it better! I don't think Avastin is a good treatment. Its blocks a protein called VEGF, which if we block it the lab does some funny things! There are too many side effects to it. Besides at first glance I don't think this study shows any benifit to taking it, or maybe a slightly marginal effect. The main thing that stood out for me was the survival rates. Overall survival for up to 4 years was 90+%. Disease free survival was 85%. Both OS and DFS were similar regardless of Avastin or not.
These are very high survival rates and also mirror a study published last year showing that 5 years survival rates for early stage TNBC (T1a-c, N0) now exceed 90%. If I'm reading the numbers right, it shows that progress has been made. Plus, these data are coming from patients who were diagnosed and treated in 2007 onwards. A lot of studies currently published on TNBC use data from patients that were diagnosed and treated pre 2000. The increased survival rates are (in my opinion) reflecting better chemo regiems, probably better chemo drug preps, quicker detection and faster times to treatment and possibly more understanding of dietary effects.
Tom
x
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Hello Tom
Thank you for your post. You always write such meaningful and interesting posts and I read them very carefully.
I shall write more later as I am just about to go out to the shops.
Fond thoughts.
Sylvia
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Hello Tom,
I was glad to know that your wife is getting through her chemotherapy and is not feeling too bad. She has now got through two doses and they are now behind her. Feeling tired is the most common side effect and all she can do is rest as much as she can. It is good to know that she is in good spirits. I found wearing a wig made me feel normal and look normal. I could not have done without it. She needs to be gentle when washing her scalp. I used Johnsons baby shampoo throughout my treatment and often massaged avocado oil into my scalp, as it can get very dry. It is good that your little girl can make you laugh. Laughter is a good medicine.
I was glad to know that everything is fine with the new baby to be.
Your little girl does sound lovely and she is at that age when children are very entertaining. I am sure she must be very excited about Christmas.
I think with breast cancer whether it be hormonal positive receptors or negative ones we have to bear in mind that more women are surviving than are not. I think the big challenge is with metastatic breast cancer and individual patients have to do everything within their power to try to stop it coming back. I know this is a challenge because even when we get a good pathology report and a no visible evidence of disease outcome, we do not know whether cells escaped during the primary treatment and are lying dormant for years and then come back. Because we have already had breast cancer we are probably more at risk of having a new primary in the other breast.
It seems to me that the introduction of the taxanes, paclitaxel (Taxol) and docetaxel (Taxotere) have probably helped a great deal in treatment and survival. I think the other common chemotherapy drugs for breast cancer, epirubicin (Ellence), doxorubicin (Adriamycin), cyclophosphamide (Cytoxan) and fluorouracil (Adrucil) have been around for a long time. I have read of them being described as soft chemotherapy, in contrast to the taxanes described as hard. On the other hand, when I was going through treatment, epirubicin was being called the red devil. We have to face up to the fact that they are all lethal.
I am still reading through the book P53 The Gene Cracked the Cancer Code. A lot of it is technical but basically it is a biography of how scientists found out about the P53 gene and how it works. When the P53 gene is working properly and is on, it causes programmed death (apoptosis) in cancer cells, but, when for some reason it is turned off, it allows cancer cells to proliferate and turn into tumours. It seems to me that what is now needed is why it gets turned off. Have you any ideas about this? I have not finished the book yet.
I do hope you have a very good Christmas and I do hope that in the New Year everything will go well for you.
Best wishes.
Sylvia
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Hello everyone,
I am just popping in to round everything off before Christmas, as I am sure you are all busy preparing for this. I am sending seasons greetings to all of you who have been posting throughout the year and making the thread what it is and for all of those viewing.
Special greetings and thanks to linali (Lindsay) in Ireland, adagio in Canada, Maryna8 in the US, InspiredbyDolce (Debra) in the US, Susaninicking, an American in Germany, you have all finished treatment but have been here to support others.
Special greetings to our UK group, Marymargarethope, Suewirral, Jackpot (Gill), Chatterbox (Michael), Jacqueline1963, and Normandee (Norma), not to forget Breastcancerhusband (Tom).
Special greetings to Carolben in South Africa who is going through treatment for metastatic breast cancer.
Special greetings to those who contributed so much in the past, bak94 (US), Christina1961 (US), BernieEllen (Ireland), and Maria in Malta. I do hope you are all well.
Best wishes, have a good Christmas and a healthy, happy New Year.
Sylvia
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Hi everyone and I hope we are all going to have a peaceful and as happy a Christmas as we can manage.
A special thank you and happy Christmas and new year to our Sylvia who is our rock and always there for everyone xx
I plan to hold my kids and grandkids and my mum close this year, this s*****y disease certainly makes us know what is important
Love Sue xx
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Hi Sylvia
I am well out of touch with the forum, Alex finally moved into his house last weekend and we have been busy arranging things and buying furniture. It must be the longest conveyancing in history, starting at the beginning of July and only completing last week. Still he is very excited and most importantly happy. I wonder if Ireland is his home for good now.
I am staying here for Christmas as Alex is working until 7pm Christmas day and then will come to me. He goes to Essex on St Stephens day for a few days.
I hope everyone has a peaceful and comfortable Christmas.
Best wishes
Michael
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Hello Sue,
Thank you for your ost and for your kind words. I am very proud of our thread and it is all the wonderful people that have posted over the four and a bit years that have made the thread what it is and keeps it going, along with all the people that view. I feel that I know people, even though I have not met them.
I do hope all of you will make the most of the Christmas holiday and the get-togethers with your families. Life is unpredictable and we never know what is going to happen, so we have to make the most of every day. All of us who have faced up to a diagnosis of breast cancer and gone through treatment know how fragile life is.
Enjoy every moment of your Christmas holiday with your children, grandchildren and your mother.
Festive greetings.
Love.
Sylvia xxxx
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Hello Michael,
It was nice to have you back on the thread and I hope you will manage to find the time to catch up on the posts, as there is always valuable information and wise words from everyone.
I can understand how busy you have been with Alex going through the stressful experience of buying a house. We are told it is one of the major stressful experiences in life, along with death and divorce. There must be a more simple way of buying a home than the way it is in England and I suppose in Northern Ireland. Raymond and I have been through it a few times and the most stressful was here. It is because everything can fall through at the last minute. It has taken eight or nine months for an apartment in our complex to go up for sale and for everything to be finalised. I think the solicitors are one of the problems or even the main problem!
I do hope Alex will settle into his new home and find happiness there.
I do hope you have a good Christmas with Alex, even if he has to work a good chunk of the day.
Keep well and be happy.
Fond thoughts.
Sylvia
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Hello Sam52.
I was just thinking about you and wondering how you are. Time goes by so quickly and I remembered suddenly that you did not reply to my last post to you. I do hope all is fine. At least you will now be on holiday from school. I do hope things are better with your father and that all is well with Tom.
I would love to hear from you. All is well here. I reached 9 years and 6 months since diagnosis on December 20th 2014.
Love,
Sylvia xxx.
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Hello everyone,
I was just browsing through some of the other threads on TNBC and came across one in which someone's mother was going through treatment for metastatic TNBC and she was asking about mir708 and I was wondering if any of you had heard of this. Breastcancerhusband (Tom) do you have any information on this?
I discovered through a little research that mirRAN is a short RNA molecule and that microRNAs function to regulate the expression levels of other genes by several mechanisms.
To simplify what I read, it looks as though mir708 acts as a metastatic tumour inhibitor and that when its function is restored tumours do not spread or form lethal macro-metastases.
I thought I should post this because genes and their functions are back in the news again and there was something about them on the news at 8 am on Radio 4.
Since I am still reading through the book about the p53 gene, I was interested in anything about genes and their role in cancer.
I would be interested in any information and comments.
You might be interested in the following link.
Thinking of you all.
Sylvia.
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