Calling all triple negative breast cancer patients in the UK

Hello everyone,

I am just popping to say hello and to wish you all a happy and relaxing weekend.

The weather is lovely here in Exmouth with enough sun to enable people to top up there vitamin D.

Please keep the thread going.

Thinking of you all.

Sylvia.

Hello Mary,

It was nice to hear from you. Thank you for clearing up my confusion.

I think it is quite unusual to start chemotherapy with docetaxel (Taxotere) but perhaps things have changed. Reading many posts over the years it seems common to start with either doxorubicin (Adriamycin) or epirubicin (Ellence) with cyclophosphamide (Cytoxan). It all gets confusing because the letters they uses are sometimes those of the generic drug and sometimes the brand name.

I know that Taxotere and Taxol are the newer drugs and the others are considered the older drugs.

I do hope you will be fine on May 21st when you have your next chemotherapy. I shall be thinking of you.

From my experience on this thread women have definitely said they found the weekly regime easier. I remember Mumtobe starting chemotherapy, if I remember correctly, and then having a pause to have a baby and then going on the weekly regime. She did get through all this, had a lovely baby called Emma. She no longer posts but I do hope she is out there enjoying life.

You too will get to the end of this.

Please let me know how you get on.

I was glad to know that your blood counts had bounced back and I can understand how this makes you feel more confident for your next session. I think it is good to go with a positive attitude telling yourself that you will be alright and blocking out all the possible side effects that can happen and especially blocking out what has happened to others. We are all individual and unique and we should not compare ourselves to others.

When I went through treatment I was not part of any group, local or on line, and so I could not compare myself to anyone else, so I went in with a clean slate as it were. I was not really told about side effects and just read the bits of information given on leaflets at the hospital. It was all pretty basic. What I think is important is to steer clear of crowded places and anyone from whom you might pick up something, as your immune system is very low and makes you very vulnerable.

I do hope your husband is picking up a bit.

Best wishes to both of you.

Fond thoughts.

Sylvia xxxx

Hello Susaninicking (Susan)

I am just popping in to say I was wondering how you got on with your mammogram on May 19th. I usually get told straight after the mammogram when I go for mine.

Thinking of you.

Sylvia xxxx

Hello sam52

I miss hearing from you and just wanted to say that I hope all is well.

Half term begins here in Devon at the end of this week. If it is the same in London, I hope you have a good rest.

Love.

Sylvia xxxx

Hello InspiredbyDolce (Debra)

I have not seen you posting anywhere lately and just hope that all is well with you.

Thinking of you.

Sylvia xxxx

Hello adagio

I was glad to know that you had an enjoyable Victoria Day. With all those vegetables you are growing you are bound to be on a healthy diet.

I was so very sorry to hear that your sister had died. That must have been very hard for you and the rest of the family. This cancer business is so awful and it seems to be unrelenting. We are told there is all this wonderful research going on and great progress being made, but far too many people are getting the disease and too many people dying from it. there has to be something very wrong with our bodies for so many people to be getting cancer of all kinds and younger and younger people. A young boy has been much in the news recently. He was dying of bowel cancer at age 19 and in a short time raised £3 million for cancer but died last week.

I still think there should be much more emphasis on prevention than treatment. After all, the treatment itself can cause cancer. Here I have one neighbour going through chemo for metastatic breast cancer, triple positive. Another had melanoma cancer 13 years ago but I has just come back after all those years.

My own brother died in 1995, age 56, of disseminated adeno-carcinoma with the primary unknown. He was diagnosed September 18th of that year and was dead by October 21st of that year. it was a terrible shock.

Thinking of you and wishing you all the very best.

Sylvia xxxx

Hello runningrivers,

I was just going back through the most recent posts and discovered yours.

First of all, a very warm welcome to our thread. There are some very interesting, informed and compassionate women on this thread and we all welcome you.

I read your post with great interest and took in the details about your particular case.

I was glad to read that you have got through your chemotherapy and radiotherapy successfully. Well done. I would be interested to know what chemotherapy drugs you had and it is always useful to add them to your details at the bottom of your posts.

You must have been relieved to know that you tested negative for the faulty genes.

I was interested to know that you worked at an oil refinery and it is very possible that such an
environment was very bad for your health and quite possibly a risk factor in the development of your breast cancer. We are told the three main causes of breast cancer are lifestyle, lack of exercise and chemicals and toxins in the environment.

I was sorry to read that you are dealing with congestive heart failure, liver problems and that you have black on your lungs. Have you been told what the experts think were the causes of these problems? I would be very interested to know.

Congratulations on being a cancer survivor and being two and a half years cancer free. Out of interest are you counting from diagnosis or end of standard treatment?

It is sad when people like us who do not smoke and are health conscious end up with breast cancer. There are many of us in that situation.

I think we are all searching for the causes of cancer, but the whole emphasis is on treatment, not prevention. We are told there are many risk factors but at the same time we are told that the risk factors did not necessarily cause our cancer.

Take care and look forward to hearing from you again.

Sending greetings to you over in California.

Sylvia xxxx

Hello Norma, thank you for your post and the information about your mother's carer. This is such a sad story. She will definitely not be TNBC if she has been on tamoxifen as that is for hormonal breast cancer. I wonder whether she was Her2 positive, as that is very aggressive. Some say triple positive receptor status is worse than triple negative. Of course we do not know what type of breast cancer she had and whether it was one of the harder to treat breast cancers.

I wonder whether she requested to get tested genetically for Brca1 or Brca2 genes. Not all family members are always affected.

I do think it is wrong to call stage1V breast cancer terminal, as it makes a person feel that they are about to die, when in fact you can live for years with this stage.  What it means is it cannot be cured,, but then I do not believe cancer can be cured. It can come back anytime and spread. I would never say that I am cured or that I have beaten cancer.

We all have to live the day and never take anything for granted.

Keep happy and enjoy the day.

Fond thoughts,

Sylvia xxxx

Hello Norma,

Even though I do not believe in a cure for cancer at the moment, it does not affect my everyday life in any way. I live normally, take care of myself when it comes to diet and keeping active, but take nothing for granted. There are so many cases of breast cancer where there is recurrence years and years after being in remission. It is difficult to say why this happens because we do not know the individual circumstances of people. There are still too many people dying of cancer and that includes breast cancer. I was reading my local paper yesterday and there was an article staring me in the face of a local woman in Exmouth who has just died of breast cancer at age 55. I had to ask myself why?

At my hospital in Exeter I do not recall ever having heard my oncologist, breast cancer surgeon or breast cancer nurse, three remarkable women, use the word 'cure' in any context. They would say 'no visible evidence of disease'. In fact, my breast cancer nurse, with whom I spoke quite a bit, told me that the medical staff did not use the word 'remission' and that it was a word used by patients.

I truly live for the day and do not focus on tomorrow.

I hear a lot of discussion about statistics and percentages on these threads, but I have never taken any notice of them. No one at the hospital has ever spoken to me about these either. When I was first diagnosed and saw the breast cancer surgeon first of all, she said that because I did not have hormonal receptor status and that tamoxifen was no good for me, that the prognosis was poor. I just chose to get on with my treatment and here I am nearly nine years later.

If you have managed to obtain the book 'B is for Breast Cancer - from anxiety to recovery and everything in between - a beginners guide' by Christine Hamill, have a look at S for Statistics, pages 165 to 169. It will make you laugh, amuse and inform you, all at the same time.

At the end of the section there is some useful information. It is as follows.

In the 1970s around five in ten women with breast cancer survived the disease beyond five years; now it is more than eight in ten.

Women diagnosed with breast cancer are now twice as likely to survive their disease for at least ten years than those diagnosed forty years ago.

Almost two in three women with breast cancer now survive their disease beyond twenty years*. (* Figures from http://www.cancerresearch.org)

I hope you have a good Bank Holiday weekend and do something that you enjoy. It has been a very busy week for me, but the most enjoyable day was having lunch with one of my nieces whom I had not seen for four years.

The weather does not look good for the weekend, but that is the UK for you.

Fond thoughts.

Sylvia xxxx