Calling all triple negative breast cancer patients in the UK
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Hello Sue,
Just popping in to say hello and to say I hope you are still coping well. Are you now into the routine of regular check ups? They usually start ate three months, then go to six months and then to once a year. What about mammograms?
Please keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I was glad to see the thread keeping active.
To Marymargarethope, what is the latest on the trial?
To Tom, are you on paternity leave and how long do you get?
To Michael, do you feel better now that the bank holiday is over? Are you still doing your surveys? How is your health these days? You will be interested in an article I found in this week's (April 4th) New Scientist magazine entitled If drugs don't work, convert the cancer. I shall do a detailed post about it later on.
Hello Hanieh, are you back to your teaching work?
Hello Jackpot (Gill), how are things going with you? When are you doing your charity fundraising event?
Hello adagio, InspiredbyDolce and Carolben. We have not heard from you in a while. Please let us know you are alright.
To all of you viewing, if you have just been diagnosed and are starting treatment, are going through treatment, have recurrence, have any problems or need support and comfort, please come and join us. You do not need to do your cancer journey on your own. We are here for you.
Best wishes to everyone.
Sylvia
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Hi Sylvia
Yes I'm back to work and somehow I'm busy these days. Yet I really enjoy the spring weather and the rebirth of nature by my every day walk in the park. I loved the flowers in your pictures and appreciate your sense of beauty. Thank God I feel much better these days and try to hold on to the view that life is going on and everything is going to get better.
Today was the mother day in Iran and we invited my mother in law to our house, gave her a present and showed her the clip I made for her with her pictures and tomorrow I m going to visit my mother to congratulate her on this day and express our sense of gratitude for everything she has done. My mother in law still persists on having a second baby and I can understand her as she raised her only child (my husband) alone and how she wishes she had more children. By the way how many children do you have?
Lots of best wishes
Hanieh
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Hi Tomate
I'm really happy to hear that you have a healthy newborn baby. Having a baby is the nicest thing in the world and I deeply pray for your wife's health .
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Hi Tom
I'm really happy to hear that you have a healthy newborn baby. Having a baby is the nicest thing in the world and I deeply pray for your wife's health .
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Hi Sylvia,
My sister was a social worker in the adult special needs area.
I think that the system was privatised and the jobs in general downgraded. Increasingly over the years that whole area became snowed under with paper work and legalities leaving less time for working with the people that need help.
All my bloods were normal,apart from cholesterol which remains high despite being on statins. He thinks the moles are OK too. There is still no evident reason for how exhausted I become so easily.
That is the most frustrating thing as I cannot do as much as I need to. I am at Kerry's house, just returned from the hospital where my grandson was born yesterday. He has Downs Syndrome and Kerry is finding it difficult to accept.
Oskar is excited to have a little brother and is kind to him already. I hope that she will get the support that she needs. I so wish that I had more energy.
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Tom, many congratulations on the birth of the baby! I know that this will be a very welcome distraction during treatment.
I haven't heard any news on the trial yet, yes it is a PARP inhibitor and was very successful in lung trials. It's a double blind trial where both doctor and patient are unaware of whether it is a placebo or not. However, I do also believe that you would know if you had the drug you would have some side affects. I will let you all know as soon as I do.
I am doing well not trying not to think about recurrence, hair has grown back nicely... and curly! Still tired and achy.....
Happy weekend all.
Love,
Mary
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Hello Hanieh,
Thank you for your post. I was glad to know that you are feeling better these days and getting back to a normal life. That is the best thing to do. Take one day at a time and enjoy it.
I was interested to know that you have been having Mothers' Day in Iran. It was celebrated here in March. It is a big day and a busy one. Here it should be getting a bit quieter and calmer now that Easter is over and most schools go back tomorrow. However, with a General Election on May 7th everything will probably not get back to normal until then.
You asked about children. I do not have any. I just have four nieces from two of my brothers, but they are all grown up now.
Enjoy your work.
Best wishes.
Sylvia xxxx
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Hello linali (Lindsay),
I would think that the work your sister was doing was very demanding. Social work and teaching are among the most stressful jobs, I think. There is too much bureaucracy in the professions now. I do not like the way schools have gone here in England.
I was glad to know that all your bloods were normal except for your cholesterol level. Since you are taking statins and they are not lowering your cholesterol, if I were you, I would get a blood test done for your thyroid to see whether you have an under-active thyroid. A friend of mine had been taking statins for a long time and it was having no effect on his high cholesterol and his GP was not doing anything about it. One day he happened to see a locum at his surgery who told him this was probably because of an under-active thyroid. My friend had a blood test, under-active thyroid was diagnosed and he was given the medication for this and everything sorted itself out. By the way, were you given the different levels with your cholesterol results? You should have been told your HDL level (known as good cholesterol), LDL level (known as bad cholesterol) and your triglyceride level. It is high LDL level that is of concern.
You mentioned that you are exhausted easily for no evident reason. If you have an under-active thyroid you will be very, very tired. I have another friend, a retired nurse, who has had an under-active thyroid for a long time and sometimes has to have her medication checked and increased because she is so tired she does not feel like getting out of bed. Her type of under-active thyroid is called Hashimoto's disease and is very common in people with under-active thyroids.
Other symptoms of an under-active thyroid are thinning hair, and putting on weight.
Have you had any problems with statins? They get a very negative write up and I have read they can cause cataracts and diabetes, not to mention severe muscular pains. I have yet another friend who had to be taken off statins because he developed pains in the legs and was diagnosed with a muscle wasting disease. He now has a lot of trouble walking.
I was so sorry to read that Kerry had had a baby boy and that he has Down's Syndrome. I do hope that Kerry will get all the support that she needs. I know how much she wanted this baby. Did she have the test that detects Down's Syndrome?
Take care of yourself and please get that blood test.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello Marymargarethope,
Thank you for letting us know that you have not heard any news about the trial. Let us know when you do. It sounds like an interesting trial.
I was glad to know that you are doing well.
It must be nice to have your hair back.
Keep looking on the bright side.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I just wanted to mention about that article in the New Scientist. It is all about treating triple negative breast cancer by changing it to a hormonal breast cancer and then treating it with tamoxifen. This is not the first time I have come across articles like this. The title of the article is "If drugs don't work, convert the cancer".
Apparently a genetic switch has been discovered that may turn the fiercest breast cancer into something not so harmful. To quote the article it says 'To grow, about 85% of breast cancer tumours need the hormones progesterone, oestrogen or a protein called HER2. That usually makes treatment simple: block those chemicals and you halt the cancer.'
I wonder whether this is so simple because there are tamoxifen failures and tamoxifen has nasty side effects. What happens when you stop taking the drug, because you usually stay on it for five years? HER2+ is very aggressive. I would not want that.
The article then mentions the other 15% that are called TNBC because they do not need any of the three chemicals and thus resist such treatment.
Australian researchers apparently analysed the DNA of eighty women with TNBC and found that their tumours produced a lot of a protein called ID4. They carried out experiments on mice and blocked the ID4 gene producing the protein.
Again, to quote the article, 'Their tumours stopped growing and other cancer related genes got switched on or off. Genes present in cancers that respond to oestrogen treatment were activated, making aggressive, resistant breast cancer look like one of the easiest to treat.'
Reading this, I was asking myself how they blocked the ID4 gene.
The article ends by saying that the research team is now looking to see if the switched tumours respond to the oestrogen-related drug, tamoxifen.
I find this all a bit Frankenstein and do not think I would submit myself to it. I think I would like to see more emphasis on finding out why 15% of women are getting TNBC and especially why it affects younger women. Is it to do with known risk factors such as having your periods early, having your menopause late, the birth control pill, not having children or having children fairly late, or general lifestyle? Who knows?
It would be nice to have comments about this article.
Wishing you all a good Sunday.
Sylvia.
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Hi Sylvia
I really don't like to change my cancer to hormone positive as the side effects of the related drugs are nasty and also as you mentioned there are lots of instances of tomoxifen failure at least in this site and moreover there are many of triple negative survivors leading normal lives.
Thanks a lot for sharing this information.
Best wishes
Hanieh
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Hello Hanieh,
I was glad to know that you shared my views. I think the less messing around with a person's body the better.
Since you have an enquiring mind, you would probably get a lot out of signing up for the free e-mail from Chris Wollams at Cancer Active. It is full of useful information and they are often far in advance of latest research and information. I have just received my latest e-mail and the heading is Cancer – why you are certainly not doomed and other research about health and healing. You can sign up at http://www.canceractive.com/
The e-mail is divided into headings with information and then within the headings underlined headings that you can click on. There is a lot of interesting information. I shall be posting some of this later on.
Best wishes.
Sylvia xxxx
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Hi Sylvia
Thanks a lot for informing me of this site. In fact knowledge is power and knowing more can help us all make better decisions. Though some times this urge to know more has caused some bad fears I can't keep myself from searching for new information. I hope one day nobody in the world experiences such fears and TNBC and all cancers becomes as curable as a simple cold.
Lots of love
Hanieh
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Good morning Sylvia,
The research that looks into " changing" triple negative cancer is some that my sister has come across on her course.
I suppose to some people it may seem like an option. I know that when I was first diagnosed I envied the other breast cancer patients the safety net of drug therapy and would probably have jumped at the chance. Now 4 1/2 years down the road I also feel that I wouldn't like the idea of mutating the cells.
I fully agree with you that more research needs to be done into tnbc regarding possible reasons and statistically the people suffering from tnbc seems to be more varied than I read when I was first diagnosed.
As I said to Michael the percentage in Clare does appear higher or maybe the women come to the centre for support ealier because they feel more uncertain because they don't have the "safety net" of follow on treatment.
Max came home last night. He has jaundice but is improving. A set back yesterday was that he didn't respond to the hearing test. Kerry was doing better but this knocked her back again. Oskar became upset last night too and hopefully mummy and daddy can take him to the circus on Saturday whist I look after Max.
We have so many people praying for them that I feel sure that it will help.
They will need a lot of support and so I must get to the bottom of the exhaustion. Thyroid test fine.
Today is a lovely day here in Wexford so we should get out for a walk.
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Hello Hanieh and Lindsay
I have just read your posts and thank you for them. I shall be replying tomorrow as I have been very busy for the past two days. I have a lot of information from my Cancer Active e-mail to post.
Lindsay, it could be that your tiredness is from your cancer treatment, especially the chemotherapy. Apparently tiredness and low energy can go on for years. You could also be tired from a shortage of iron. Did you have this checked in your blood test? What about low haemoglobin? To get iron, take an iron supplement or better still get iron in your diet - prunes, dried figs, red kidney beans and eggs. Those are the kinds of things I eat.
Talk to you tomorrow.
Fond thoughts to you both.
Sylvia xxxx
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Hello Hanieh,
I was glad to know that you appreciated my informing you about the Cancer Active site. I think that Chris Woollams and this charity is one to follow. They are often very much in advance with their information and they have a great following on the internet. I came across them when I was first diagnosed in 2005. I went to FORCE, which is a cancer charity in the grounds of the hospital I was attending. My oncologist is the patron of FORCE. It was there that I discovered the magazine the magazine put out by Cancer Active and I have been reading it ever since. It does not seem to appear as often as it used to, so I suppose the emphasis is now more on the internet.
I do agree that information can be frightening, but I also firmly believe that knowledge is power and that ignorance is NOT bliss. We all have to be informed, especially about our cancers. We are in charge of our bodies and our treatment not out medical teams.
I do not think there is a magic bullet for the treatment of cancer, but I do hope cancer will become more easily treatable and not the frightening disease that it is today. I think there should be much more emphasis on prevention.
Sending you my best wishes,
Sylvia xxx.
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Hello Lindsay,
I have at last found some time to get to the thread.
I would be very interested to know anything that your sister comes across in her course, as we need all the information we can get about breast cancer in general and TNBC in particular.
I definitely do not think that changing TNBC to hormonal is the way to go. I consider myself lucky that I have not had to have tamoxifen with all its side effects, especially weight gain, which in itself is a risk factor in cancer and a lot of nasty diseases such as adult onset diabetes. Tamoxifen also causes cataracts. I would not have wanted to take any of the aromatase inhibitors, such as Arimidex, which causes osteoporosis, which cancer treatment can cause anyway, so I would not want a double whammy.
I was also glad not to be HER2+ because that would have meant long term treatment with Herceptin. Being triple positive is more aggressive than being triple negative, so I am very positive about being negative.
We definitely need to find out what causes TNBC and why it is more prevalent in younger and younger women. We also need to know why it is that if TNBC is a young woman's disease, why it is that we have so many older women and post-menopausal women being diagnosed.
There are lots of risk factors stated that are associated with breast cancer in general, but we need more definite answers. We hear a lot about research and trials but I wonder how much we are really moving on. We still have the same old treatment as we had years ago.
From my reading of my Cancer Active notes, I find four causes for cancer. They are diet, lack of exercise, environmental toxins and stress. I think the most difficult one of these is probably environmental toxins, in the outside environment, in our homes, household cleaners, toiletries, cosmetics etc. We seem to live in a world awash with lethal toxins.
It could well be that for some reason there are clusters of TNBC in certain areas. I wonder if anyone is researching this.
I do hope Max will make some improvement and that his jaundice will disappear. I do hope his hearing will improve. I am sure that the hearts of all of us go out to your daughter. This must be a terrible ordeal for her.
I can understand Oskar getting upset. Who knows what is going on in his mind. He is having to get used to having a baby brother and not getting all the attention to which he has become accustomed. I am sure he will love going to the circus with his mum and dad.
Try not to overdo things and rest whenever you can.
Fond thoughts.
Sylvia xxxx
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Hello Maryna8,
I was just wondering how you got on with your two visits this week. I hope all went well with your medical visit on Monday April 13th and that all went well with your visit to your oncologist on Thursday April 16th. Please let us know how you got on.
We are having some nice weather here in Exmouth with temperatures up and down, but we are now in dire need of some rain. Some steady rainfall during the night would be so good for the grounds here.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
It is Friday again and I hope the week has been good to you all. I hope to hear from our nice group of posters soon. We have not heard from adagio, InspiredbyDolce and Carolben in a while, so I do hope you are all fine.
To Jackpot (Gill), have you done your skydive for charity yet? Do you know anything about Naltrexone (LDN), which is an opioid and anti-inflammatory, often taken in conjunction Alpha-Lipoic Acid for the treatment of cancer.
LDN is also known as ReVie. In some notes I was reading I read it has a considerable and growing number of fans across the internet for the treatment of cancer. It apparently seems to block cancer progression. I also read that it is claimed to have benefits with other diseases such as Rheumatoid arthritis, Parkinson's, IBS and MS.
That is all for today. Have a good weekend.
Best wishes to everyone.
Sylvia
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Hi, Sylvia and all,
I had a pretty good week. Monday I had the MRI and the CT scan on my lumbar spine. It is the third time they have looked at it, they were watching a suspicious spot. They have now decided it is a cyst on my spine that has been growing slowly since 2012. Not cancer! I also got results on my bone density test, results were normal. Thursday I saw my oncologist, she examined me and she thinks I am doing quite well, she even used the words cancer-free! I think I am not going to throw those words around too easily until a few more years go by! She did tell me again that she will keep a close eye on things because the first 5 years are the tricky ones with this diagnosis.
She also suggested I see an orthopedic doc about my back. I do have quite a bit of pain there. But I also have so much arthritis in the spine that even if they did something about the cyst, I would still have the pain from that. Yesterday I had quite an active day, I helped my brother with a brush-clearing project he is doing on my property. By afternoon my shoulder and back were saying "no more." It seems I cannot be the same person physically I was before all this. Perhaps it will just take more time. For now knowing that "the spot" is not cancer is good enough!
We are having a lovely spring. I cannot recall seeing the flowering trees and bushes more beautiful that they are this spring. I suppose in other years there was always a freeze at a time that would stunt part of the buds. We are as green as I imagine Ireland to be to go along with it. On the down side, it also seems to be a good climate for the bugs. I have been battling ants in the house, I have never had that before. While in the woods yesterday, I was crawling with ticks, I had to borrow my brother's bug repellent and spray myself to get rid of them. Hard to get away from chemicals in this instance, when bugs invade your house and body I just want rid of them, no matter how!
I was reading your comments on drugs for cancer treatment. I have been hearing too about drugs they are re-purposing to treat cancer, kidney disease etc. Very interesting, it's too bad that most of them take so long to go through testing. It seems they should already know they are safe enough. I suppose really it is to prove they work for more than one disease. Over here I believe the insurance only pays if the drug is being used for its original purpose.
Well, off I go, I have a busy day. But not too strenuous!
Talk to you soon, glad you are feeling so well.
Best wishes to all!
Mary
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Hello Maryna8,
I was glad to know that you had a good week and that you had good news from your scans. You must be very relieved. I am glad to know that your oncologist thinks you are doing quite well. Keep up the good work.
I would be very wary of seeing an orthopaedic doctor about back pain, especially a surgeon. I know quite a few people who have had back surgery and they have all ended up with worse back pain than before.
It sounds as though you had a very busy day with your brother and I am not surprised your body was telling you to stop. We all have to learn to pace ourselves.
Spring does seem to be different here as well. In the south of the UK it has been warmer than usual and we have had very little rain. The grounds are desperate for some good rainfall. I do not know where the April showers are? In the north of the UK, especially Scotland, it has been very wet and very cold. Dealing with bugs is definitely a problem and you have to use insecticides. I do not envy you your ticks. Are they the ones that cause Lyme disease?
It is true about cancer drugs. The trials take way too long and have to go through three phases. I do not think we are making progress quickly enough. I have to keep reminding myself that we have to see cancer as one systemic disease and that all the different names come from where the cancer cells decide to land and grow into tumours. For example, there is a lot of similarity between hormonal breast cancer and prostate cancer, and I was reading that docetaxel (Taxotere) is used to treat prostate cancer and that it can be aggressive and slow developing. I know several men here whao have been through prostate cancer and it is no picnic.
I hope you manage to have a nice weekend.
Best wishes.
Sylvia xxxx
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Hello everyone,
I am posting a few snippets of information that I found in one of our newspapers yesterday. One was entitled "Divorce is heart breaker". It stated that divorced women have 24% higher risk of having a heart attack than wives. Two divorces ups the risk to 77% according to US researchers.
The risk remains at 33% even when a woman remarries.
For men, divorced men had about the same heart attack risk as those who stayed married. Their risk rose after two divorces.
Divorce is a major stressor. The research found that it can have a lasting imprint on people's health.
What caught my eye was that divorce has also been linked to an increased risk of breast cancer, as well as of diabetes, depression and insomnia.
This study came from Matthew Dupre, Associate Professor of Medicine at Duke University in North Carolina.
According to official statistics, 42% of marriages in the UK now end in divorce.
Another article that attracted my attention was entitled "Doctors are told: prescribe health boosting hobby" by Louise Newlands. The article stated that gardening could play a crucial part in living a long and healthy life, according to the experts. Apparently, doctors are being urged to issue "green prescriptions" telling people to go outdoors and get gardening. The benefits can help with conditions such as dementia, stress and depression and can also help people to control their weight and lower their blood pressure. This information comes from the Growing Health project.
The suggestion is that if you do not have a garden, think about joining community schemes in order to keep fit.
Both these articles came from the Daily Express on Thursday April 16th 2015.
There is another article on the same day by Louise Newlands entitled "Dementia link to depression and diabetes". The article starts off stating that people who suffer both type 2 diabetes and depression are at dramatically increased risk of developing dementia in later life. I shall leave it up to you to look up more information if you are interested.
I have still not had time to print the headlines from my latest Cancer Active e-mail, but I shall do it when I can. One of the most important is number 3 on my e-mail and is all about the great importance of vitamin D supplements. The title is "Now vitamin D shown to help people with prostate cancer".
And underneath this it says vitamin D is the number 1 supplement to take if you have cancer, and numbers 2 & 3 are fish oils and curcumin. There are headings to click on as follows:
Vitamin D and prostate cancer.
Vitamin D3 supplements.
Vitamin D and cancer.
I think we should all know our vitamin D levels and keep up them topped up at the higher end of the scale. We should all get out in the sun during the sunny months, but not overdo it. Sunshine is the best source of vitamin D.
It would be nice to have some comments on all of this and I would be interested to know how many private cancer groups there are on Facebook or other sites. I ask because apparently there has been a lot of talk about LDN (Low Dose Naltrexone) and ALA (Alpha-Lipoic Acid) helping people for whom orthodox medicine has failed. I have never heard of these drugs.
It would be nice to have some comments and input, as I do want the thread to be interactive.
On Monday April 20th I shall be two months away from my ten year survival.
That is all for now.
Best wishes.
Sylvia
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Hi Sylvia and others
Again thanks a lot for this precious information. Yesterday I had my regular checkup with my surgeon and thankfully everything was ok. But he suggested to have diphereline injection for the next six month to protect my ovaries. Also he told me getting pregnant can be protective , yet I should wait for a while.
Best wishes
Hanieh
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Hi Hanieh,
So glad to hear that your check up went well.
You have decisions to make and I hope that you get all the information and advice that you need.
Here in Ireland it is a glorious day and we are going to the sea later.
Thinking of you
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Hi lindsay
I'm really happy to hear from you. Also, I am glad you're enjoying a great day in Ireland and wish you the happiest events to happen. Have nice time there.
Lots of love
Hanieh
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Hello Hanieh
I was glad to know that all was well when you went for your check up. That is good news. Keep up the good work. I appreciated your word of thanks for all the information that I post. I get discouraged when there is no comment on this information. Everything has to be interactive and two way. You cannot go through life taking but not giving.
Keep well,
Fond thoughts,
Sylvia. xxxx
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Hello Lindsay,
I am just popping in to say that I hope the situation is getting better for your daughter and the new baby Max.f
How is everything going for you and the rest of the family?
I have been busy in the grounds today, but there is a cold easterly wind blowing and I felt quite ore cold. I am hoping we shall get some rain soon as I am fed up with dragging the hose around.
Do you ever have any news about Bernie Ellen or Carole (mumtobe)
Thinking of you,
Sylvia.xxx
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Hello everyone,
I am posting about a recent e-mail that I received from Chris Woollams at Cancer Active (chrismeanshealth@gmail.com). There was information about a speech he made at Bracknell which was a huge success and a complete sell-out. What caught my attention was information about Jessica Richards, who obviously spoke for twenty minutes as a Living Proof on how she beat breast cancer with no conventional therapies but just diet, exercise, IVC, Black Salv and a determined mental attitude. Obviously there was great interest about this from the audience.
In two weeks time Chris will be launching Health Academy Live which will contain downloadable copies of speeches and interviews, plus icon magazines that can be accessed from anywhere in the world. There are other items of interest in this e-mail under the following headings.
Please support our London Marathon runners.
Do your gut bacteria control your DNA?
Dementia/Alzheimer's linked to being overweight in middle age.
Are you a Manchester United fan, by any chance? - signed shirt on eBay.
Colourful Mediterranean diet linked to longer life – Rainbow diet – Rainbow diet has marked effect on telemeres.
I would be interested to know how many of you have signed up for these e-mails and read up everything on line.
Remember, knowledge is power and ignorance is not bliss!!!
Best wishes to all.
Sylvia
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Hi everybody
Sylvia l love you so much for all the effort you put to impart you new information and to support all here by trying to encourage them to learn more. In fact no doctor can help us unless we are our own doctors supporting our bodies physically and mentally. And there is a great power in all of us which can only be effective if we consciously ask for it.
Wish you long long healthy happy life
Hanieh
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