Calling all triple negative breast cancer patients in the UK

adagio

Greetings from Australia,

Having a slower day today to catch up with e-mails and reading. Currently we are in Port Douglas. From here we will go to the Great Barrier Reef and into the Daintree Rain Forest. It is hot and humid here. On September 25th, it was 4 years since my surgery - so for all those going through treatment - there is a life ahead of you - be patient and it will come sooner than you think. I continue to be grateful each and every day for my health.

I visited with a childhood friend on the Gold Coast whom I have not seen in close to 50 years - what a reunion! We had a lifetime of events to catch up on.

After the Great Barrier Reef, we will fly to Perth and explore Western Australia. I must learn how to put photos on here and share some with you all - lots of interesting birds. I have seen kangaroos in the wild and we have done some amazing hikes.

All the best to those going through treatments - it does end eventually. Sylvia - I so agree with you on many of your comments regarding environmental and dietary factors in contributing tocancer. In fact - one of my biggest challenges here is getting decent food to eat. Will comment again later.

ChrisAsh

hi

Hi Kat

I thought I would update you on my treatment as I know you are soon to start taxol and are feeling a bit anxious about it. I had my first tax ( paclitaxel) / carbo last week and it was fine. I requested the cold mitts for my hands& feet because of the potential risks of neuropathy & even that was doable. I was a bit concerned about that because I'm usually not good in cold weather. The only negative I can report is that I developed a chemical phlebitis towards the end of the carbo which has been slightly painful. Next week I'm going to ask the nurse to slow down the infusion as that may help.

Fond thoughts

Chris xx

Honeytagh

Hi Sylvia and everyone

Tonight I found some time to come here, read your precious posts, and post here.

Sylvia, your flowers as always are amazing. I would like to call them your flowers as I'm sure you are the one who really cares about such beauties. I wish I had the chance to garden as well. Also, I really appreciate your posting so much valuable information here.

Mary, I hope you are feeling better now. You also have the chance to enjoy the beauties of nature. I hope it gives you lots of energy as a remedy for all your pains.

adagio, so happy to know that you are enjoying your time in Australia. Please post as many pictures as you can.

lilyp6 I'm so happy if I could be the least source of inspiration to anybody here. Life is much better after this trauma.

ChrisAsh, these days will end soon and wonderful days are awaiting you.

Last weekend, some ofriends my colleagues and I went to a historical museum called Golestan Palace in Tehran which dates back to 500 years ago. It was amazing. There, I saw lots of tourists from many countries. I was really happy to welcome them here.They reminded me of all my trips and all of you here.

Love

Hanieh

Kathseward

hi Chris I have1 more AC then on to paxitaxol. Not having carbo. Having trouble focusing on going forwards because feeling lumps and bumps everywhere and terrified they have missed something! Hate this feeling just want to focus on get better. Great u are doing well

Cheers

Kath

Honeytagh

Hi Sylvia and everyone

Tonight I found some time to come here, read your precious posts, and post here.

Sylvia, your flowers as always are amazing. I would like to call them your flowers as I'm sure you are the one who really cares about such beauties. I wish I had the chance to garden as well. Also, I really appreciate your posting so much valuable information here.

Mary, I hope you are feeling better now. You also have the chance to enjoy the beauties of nature. I hope it gives you lots of energy as a remedy for all your pains.

adagio, so happy to know that you are enjoying your time in Australia. Please post as many pictures as you can.

ChrisAsh, these days will end soon and wonderful days are awaiting you.

Last weekend, my friends and I went to a historical museum called Golestan Palace in Tehran which dates back to 500 years ago. It was amazing. There, I saw lots of tourists from many countries. I was really happy to welcome them here.They reminded me of all you here.

Love

Hanieh

Honeytagh

This is a picture of me and some of my colleagues in Golestan Palace in Tehran

ChrisAsh

Hi Kat

I completely recognise those feelings of anxiety and fear. I too seem to spend my days worrying about whether the treatment will work / the disease comes back or that something may have been missed . I think it's fair to say that this disease is consuming my whole life and its horrible. To try and keep myself sane and because I'm not currently working I try to have things planned each day to fill my time and also make sure that I get in a reasonable walk each day as I find that helps. Fortunately the weather here has been ok so far so I can do this.

Good luck with your last AC - you are now almost there! Are you having taxol x 3 every 3 weeks or each week for 9 weeks ( as I am)?

Love Chris xxx

Kathseward

hi Chris

Having it once a week for 12 weeks! It's bloody awful isn't it! I have lost 12 kg and can feel lumps and bumps everywhere. My dr tells me it's just fatty tissue but I live in fear! I need to have some faith in my Drs. Get there slowly but it's such a long journey

Cheers

Kat

Kathseward

it looks magnificent

maryna8

Sylvia and all,

I got this in my email, thought I would share, somewhat touches on the environmental elements that may be contributing to BC incidence.

https://thetruthaboutcancer.com/cancer-research-true-cause/?gl=582843432

Clicking on the cancer research sites he touts leads to a lot of information as well.

Mary

sylviaexmouthuk

Hello Mary,

Thank you for your post from October 1^st. As usual I found it all very interesting. There is no knowing what we have ingested during our lifetime. I remember, like you, all those dreaded poisons such as DDT and malathion. What is done cannot be undone, and I dread to think what we are ingesting now.

What you said about chemotherapy made me think once again about the way cancer is treated. When I was diagnosed, I was told that, because I had been healthy almost all of my life, my immune system had got lazy and failed to deal with the cancer that was hitting my body. That means to be too healthy makes you a target for cancer! The treatment then goes about weakening your immune system to kill cancer! I do not quite understand this. I have always thought that you would need to boost your immune system, which is what alternative medicine seems to do.

That is all for this evening, as once again I am trying to catch up!!!

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Pam,

I was interested to know that your job is as an office manager in the Career Centre of a university. I can imagine that it must be a very interesting job and do not doubt that you have met some fascinating people during the ten years you have been there.

I do hope all is going well with your chemotherapy and I bet you are counting the days until November 1^st when you finish.

I was thinking that you might be interested in reading the thread on here entitled Survivors' stories from around the world. The Moderators invited me to tell my story and I did. It is on there and Mary and Hanieh have their stories too.

Keep in touch and tell us how you are feeling.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Kath,

Thank you for your post. I think oncologists may differ a little in their approach, but on the whole standard treatment is roughly the same. The treatment is chemotherapy before or after surgery, and for primary breast cancer, there is a group of drugs that everyone gets, with very little variation. Everyone I would think gets surgery, either a lumpectomy or a mastectomy and then to finish off radiotherapy. After that, it is regular check ups for TNBC and the same for hormonal breast cancer, except they have the addition of anti-hormonal drugs of various sorts.

As for diet, I think everyone has to make their own choice. I do not believe that a low fat diet is the best way to go, as we do need healthy fats, such as omega 3s in fatty fish, mono-unsaturated fats such as in avocados and even some saturated fats. I think we need to keep away from trans-fats, such as in processed foods like biscuits, cakes, confectionery and junk food.

I think dairy products are to be avoided. I was told by my consultant surgeon that they were a risk factor in breast cancer. I do not touch any dairy foods and get my calcium from Alpro almond drink, unsweetened and enriched with calcium. I do the same with soy enriched plain unsweetened yoghurt. I try to eat calcium rich vegetables such as kale, bok choy and greens and cabbage.

I do not think dairy food helps to form strong bones. The highest cases of osteoporosis are in countries where dairy foods are consumed.

We shall all be thinking of you on October 7^th when you have your last AC.

Keep looking forward.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello adagio,

I was so glad to read your post and I am sure we all appreciate hearing from you while you are on this great adventure.

Congratulations on being four years out from your diagnosis. I am so glad that you have stayed with us on the thread, as you make a great contribution.

It sounds as though you are having a really great time and I do hope you will be able to send us some photographs.

If you get to the north of Perth, you will find the only other Exmouth in the world, but it is much smaller than Exmouth in Devon, England.

Let us know how you are managing to eat healthily while you are away and please send some photographs.

Thinking of you and sending you best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello Chris,

I have just read your post to Kath and was glad to read that you were helping to diminish her anxiety by saying that the paclitaxel (Taxol) was not that bad.

I was very interested to know that you had requested cold mitts for your hands and feet, because of the potential risks of neuropathy. Let us hope that the cold treatment will work.

I was sorry to read that you had developed chemical phlebitis towards the end of the carboplatin treatment. I do hope it clears up soon.

I hope all goes well next week. I hope you will let us know.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Hanieh,

Thank you for your post. It is always a pleasure to hear from you.

I was glad to know that you like the flowers. The photograph with the potted plant is of a cyclamen. It is a winter plant and they are everywhere at the garden centre at the moment. They seem to come in all different pinks, reds and whites. I got that one last year and it bloomed all through the winter. It kept its leaves all through spring and summer and is now once again in full bloom.

It is true that I look after all the plants in our grounds. Everything is still very colourful with summer flowers, but today it has been much cooler with a strong, cold wind. Tomorrow our gardener comes to cut the grass and do heavy work in the grounds. I have a lot of daffodil bulbs for him to plant.

I do like following all your activities and you do get around! Thank you for the photograph which I found very interesting. Everything you post is so educational. If Iran is mentioned in any of the media, it is always of special interest to me because I have got to know you. That museum sounds very educational.

Sending you fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Mary,

Thank you for your post and for the link. I shall have a look at it tomorrow.

I have been reading my way through the October edition of What Doctors Don't Tell You. There is so much in it that it is mind boggling. One of the main articles is about the birth control pill. The title is "Dirty little pill – A half-century on, the birth-control pill is still plagued by a host of nasty and sometimes deadly side effects. Celeste McGovern finds a growing movement of defiant young women who are turning to natural alternatives". The article is six pages long and I hope if you cannot obtain the magazine you will be able to find it online.

One bit of this article that stands out is "Newer versions of the pill are proving to be even more dangerous than their predecessors".

I shall try to post some more about this article tomorrow, even if I just post the headings to each paragraph. I must just post the following which should be of great concern. "Women who use the Pill for more than a year have a 2.5 times higher risk of triple negative breast caner, which has a higher mortality rate."

in this article, the danger of the contraceptive pill seems to tie in with what Professor Cicolella said in his article.

That is all for this evening.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Amanda,

I hope all is well and that you are not too stressed at work. I hope you are managing to keep up with the thread.

Hello Claudia,

How is the chemotherapy going?

Hello Rhonda,

Have you now started your treatment? Let us know how you are doing if you have.

Hello Val,

Are you progressing well after your stroke? I do hope so. We are all thinking of you.

Hello 4everstrong over there in Paris, France,

Are you having regular check ups now that you have finished chemotherapy? Let us know how things are going.

I hope everyone is having a good and positive week.

Best wishes to you all.

Sylvia xxxx

sylviaexmouthuk

Exmouth sunrise this morning

rlk58

Hello Sylvia,

I start my first treatment tomorrow.I will keep you updated

On how it goes.Thank you for asking

Rhond

sylviaexmouthuk

Hello Rhonda,

Thank you for your post. Try to get a good nights sleep.

We shall all be thinking of you tomorrow.

Fond thoughts.

Sylvia xxxx

maryna8

HI, Rhond,

The chemo isn't bad when you are getting it, I got stuff like Benadryl first which makes you sleepy and relaxed, and maybe steroid too before, or maybe you are taking steroid pills. The drug line-up might be different for you, that's just what I had. The nurses will be very nice and there will be people all around you going through the same thing. I will be thinking of you tomorrow.

Tell us what you thought about it when you feel like it!

Mary

rlk58

Thank you Maryna8,

We are on our way and my oncologist left a message saying my Ct scan is clear and that is good news.I will post when I am done.Thank you:)

Rhonda

rlk58

First chemo went well.No nausea,just a little headache.

Glad it's over and happy to be home.

Rhond

maryna8

Good deal, Rhond!

I bet you are glad to be home, just take it easy for a while.

We will talk to you soon,

Mary

sylviaexmouthuk

Hello Rhond,

I was so glad to know that you have got through your first dose of chemotherapy and that all went well.

Remember to take any medication you have been given.

You are going to get through this and you will motivate others.

Remember to drink plenty of water, get as much rest as you feel you need, and keep looking forward.

Fond thoughts,

Sylvia xxx.

sylviaexmouthuk

Hello Mary,

I read your link today and found it most interesting. It says everything that I believe in. I could not have said it better.

The article summary at the end spells it all out clearly and I think every one should read it, It is clear and simple to understand.

It is not very optimistic for a future cure of cancer but I have never really believed in one and have always thought that prevention was the answer,

Somehow we need to get the focus clearly on TOXINS.

I do despair of greed and profit.

Sending you fondest thoughts,

Sylvia xxx.

sylviaexmouthuk

Hello Kath,

I just wanted to let you know that I shall be thinking of you tomorrow as you finish your last A.C.

Fond thoughts

Sylvia xxx

Kathseward

done today and not too bad Slyvia physically well hydrated. Will see oncologist face to face Monday to get him to feel all my lumps and bumps. They stil didn't drop my AC so I'm expecting to have a bit of a rough time but I'll cope. They are going to drop the paxitaxol I think

Woke to the news of a high profile journo in Aus who passed last night with breast cancer. Didn't say what type but she was first diagnosed 4 years ago and it came back 5 weeks ago and that rocked me just before chemo. She was the same age but I suppose everyone is different and I'm try real hard not to think about that stuff and just concentrate on me getting better. So hard when the media is full of it today tho but I need to kerp remembering my good prognosis and keep moving forward. One day at a time

Cheers

Kat

sylviaexmouthuk

Hello Kath,

I was glad to know that you had finished AC and that you are not feeling too unwell. Make sure you keep well hydrated, get as much rest as you need, and keep looking forward.

I must say that I am surprised that your doctors did not drop the dose of AC in line with your weight. Tell yourself you are not going to have a rough time but that you will face whatever problem there is with this last dose.

You must ask questions and not just assume that your doctors know what they are doing. This is your body and you call the shots.

As for when you begin paclitaxel (Taxol) on a weekly basis, this must surely be a lower dose that you will have more often. All the women that have been through the thread say that they found weekly doses easier to deal with than the three-weekly ones.

I can understand how you feel about the death from breast cancer of a high profile journalist. Try not to focus on this and keep positive about yourself. The media will always emphasise those that die from this disease but forget to mention all those that survive. Keep in mind that more women survive this disease than die from it. With the journalist you would need to know what kind of breast cancer, whether it was one of the more rare ones, whether faulty genes were involved, age and what she had been doing since diagnosis to try to stop it coming back. We cannot compare ourselves to others because we are all individuals with different make ups.

Let us know when you will begin the weekly Taxol.

Enjoy your weekend and take care of yourself.

Fond thoughts.

Sylvia xxxx