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Topic: Calling all triple negative breast cancer patients in the UK

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Sep 12, 2010 08:43AM - edited Oct 22, 2019 02:02PM by sylviaexmouthuk

sylviaexmouthuk wrote:

With so many forums and threads on this site to go through for information, I thought it would be a good idea for all of us in the UK to form a forum specifically for us, and to give our details and experiences in a compact manner. Anyone else in the world is welcome to join in.

I was diagnosed with a very large tumour, triple negative, in 2005. I had pre-adjuvant chemotherapy, epirubicin, cyclophosphamide, and then docetaxel, followed by right breast mastectomy with removal of seven lymph nodes, only one affected, the sentinel node. I had three weeks of radiotherapy plus boosters. I had very few side effects from all of this treatment, except fatigue. I am still in the clear after 14 years and 04 months. I still live with fear of recurrence or spread, but I live a normal active life. If I can do it, so can you!

I would love to hear from anyone in the UK or anywhere else in the world. It would be useful to find out how many of us are affected with triple negatives and to share information, comfort and support.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Nov 29, 2019 12:01PM dono7392 wrote:

I was recently diagnosed with triple negative breast cancer (2.1 cm, 0LN). My doctor would like to prescribe AC-T but I see many have done just the CT regiment. I would prefer to avoid Adriamycin if at all possible (statistically it will only improve my survival by 2.5% - which is something but not significant in my view). I would appreciate any insights as to why some TNBC patients received the AC-T v CT therapy. Thank you in advance.

Dx 9/3/2019, DCIS/IDC, Left, 2cm, Stage IB, Grade 3, 0/8 nodes
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Nov 29, 2019 10:02PM maryna8 wrote:

hi dono

I don't exactly know the answer to your question. My treatment was 5 years ago, and ACT seemed to be the standard then. The platins are in use more now than at that time, I think. I don't know if Adriamycin is any worse than the other drugs, they all have differing effects on different people. You would get a heart test before it is used, to make sure your heart is healthy. Your oncologist will choose what drugs will work best on your tumor, and will be able to answer your questions about why he/she chooses them.

Perhaps someone else will come along and give you a better answer, I do wish you the best and am sorry you find yourself here. Let us know how things go, I know it is a scary time for you, we are here for you.

Mary




Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 30, 2019 05:18AM sylviaexmouthuk wrote:

Hello Gill,

I agree with what you said about the press.

It is very sad news about what is happening to your hospital. I would think this is happening to a lot of our hospitals and it really seems now that we have no NHS. The final blow will be when and if the Conservatives get a majority government and make a deal with Donald Trump. At our local surgery it is almost impossible now to get an appointment with your GP. It is not recognisable as the surgery we joined 18 years ago when we came to Exmouth.

I dread to think where we are going with cancer treatment.

We have very high winds here and it is very tiring.

Take care of yourself and enjoy the weekend.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Nov 30, 2019 05:22AM sylviaexmouthuk wrote:

Hello Mary,

It was nice to hear from you.

It sounds as though you are very busy. I do not like autumn with all the leaves flying around and it is hard work trying to keep everything tidy.

I do hope you can find a bit of relaxation.

Keep well and try not to overdo things.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Nov 30, 2019 05:26AM sylviaexmouthuk wrote:

Hello Kath,

Thank you for that most interesting photograph.

You are having drought and we are having too much rain! It was very cold and damp yesterday and most unpleasant. Raymond and I went through much colder temperatures in Canada but it was dry and often very sunny, so we got through it.

We just have to keep on dealing with everything that is thrown at us and just make sure we live healthy lives and keep well.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Nov 30, 2019 05:49AM Rosiecat wrote:

Hi Dono,

Welcome to this very supportive thread. Sylvia may well have more information for you. I began chemotherapy in October last year. My treatment was FEC-T. I visited an oncologist at Guys Hospital in London for a second opinion about treatment and he recommended FEC-T. As he also trained oncologists at the world renowned Royal Marsden specialist cancer hospital, I went with his advice. However, your chemotherapy will be tailored specifically to your needs. If you're in doubt, a second opinion might be a good idea.

I hope you'll keep posting, we all want to support you and you can always ask us about our own experiences /side effects and of course the many concerns we have following a breast cancer diagnosis. I remember having so many questions and found that there was always someone here to help.

Good luck.

Love,

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Nov 30, 2019 05:51AM sylviaexmouthuk wrote:

Hello dono,

Thank you for your post and welcome to our thread. When it comes to chemotherapy treatment it is best to listen to your oncologist and discuss everything thoroughly with him or her. The oncologist will have chosen a regimen of chemotherapy drugs that is best suited for you. If you have problems with any of the drugs, discuss it until you are satisfied. The drugs belong to different groups and act in different ways on the cancer.

As for doxorubicin (brand name Adriamycin) it is an old drug going back to the fifties and belongs to what is described as the first generation of chemotherapy drugs. In that same group is epirubicin (brand name Ellence). They are described as cytotoxic antibiotics.

Cyclophosphamide belongs to the group of drugs known as alkylating agents. T is for the taxane group of drugs and includes docetaxel (Taxotere) and paclitaxel (Taxol). All of these drugs have side effects. There is medication given to help with side effects. You need to discuss all of this with your oncologist before you start treatment.

In a book I have about these drugs it says the following: "doxorubicin is one of the most effective anti-cancer drugs. It is usually used in conjunction with other anti-cancer drugs."

"Nausea and vomiting after injection are the most common side effects." "The drug may stain the urine bright red but this is not harmful."

You should ask your oncologist to detail all the possible side effects and ask her to explain medications to alleviate some of these side effects.

You should have an ECG before and after your chemotherapy treatment to ascertain the state of your heart before and after treatment.

Many women who have been through this thread have said that they found chemotherapy treatment easier to deal with when it was given every week, rather than every three weeks. As you go through treatment you should have a blood test before each new session to see if everything is in order for you to go to the next treatment. If it is not the treatment might be delayed.

You can get through this and all of us here attest to that.

Good luck with your treatment and you are welcome to stay with us through it all for help and support.

Best wishes.

Sylvia

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 1, 2019 06:38AM helenlouise wrote:

omg kath. That is some serious dust! We have rain and cold. January 1 and I have a jumper on! Hope you guys are getting some rain x

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Dec 1, 2019 09:24AM marias wrote:

Hi. Today I have finished my first cycle of xeloda. I rest for a week and start Saturday again. I felt tired but no other discomfort. In Colombia, daily demonstrations related to the National Unemployment have begun. There are marches, musical shows, yoga in the park, cacelorazo, from this last one my mother and I participate from the living room of the house, with pots and a wooden spoon. in Colombia the protest is supposed to be a right but the armed police pull gas repressesand has killed a student. the night of the curfew was full of suspicion began to send messages from people living in closed units and with security guards who are armed saying that those units were going to enter the "vandals" but that message began to spread for all units closed in a medium economic condition, the inhabitants of these came down with sticks and weapons to the goals and surrounding streets .. the very violent people waiting for the one who was coming to steal. It seemed incredible to me that belief of the people and in the videos that arrived they were full of screams and panics but I don't know they saw vandals only armed people in the units. I wondered how they are going to steal units ... if what we have more in Cali are houses. the police went from one side to the other, but nothing happenedthese inhabitants of the units drew machetes sticks and weapons. they could have affected some people with their violence and the shots they made in the air. The next day in Bogotá there was a curfew and the panic began in the units, once again encouraged by the WhatsApp. Many people give the explanation that it was the same government to send the army to take control.

these inhabitants of the units drew machetes sticks and weapons. they could have affected some people with their violence and the shots they made in the air. The next day in Bogotá there was a curfew and the panic began in the units, once again encouraged by the WhatsApp. Many people give the explanation that it was the same government to send the army to take control.

Abrazos

Marias


Dx 11/19/2016, ILC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 12/26/2016 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Dx 7/4/2017, ILC, Right, 1cm, Stage IIA, Grade 3, 1/19 nodes, ER+/PR-, HER2- Surgery 7/4/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 9/4/2017 Whole-breast: Breast, Lymph nodes
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Dec 2, 2019 06:02AM Rosiecat wrote:

Hi Marias,

I'm glad to hear that you have no side effects from Xeloda other than tiredness, though feeling tired all day is difficult enough.

Your country seems to be in a desperate state. You must be very worried, especially now that people are arming themselves. Firing shots into the air is so dangerous. I hope that you have enough Xeloda and food at home so that you can avoid going out for a while. It must be difficult to feel safe at night.

My thoughts are with you.

Love,

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 2, 2019 06:33AM Rosiecat wrote:

Hello Sylvia,

There is an article in the Guardian, 29th November, that's worth looking at. The Guardian has seen papers regarding NHS cuts to 34 tests and some surgeries. X-rays, mri, blood tests, knee surgery, surgical removal of kidney stones are amongst those at risk. This will force people to pay privately, assuming they have the money. Will it then appear that people are voting with their feet for a privatised healthcare system?

Our GP surgery is no longer coping. It's now a 4 - 5 week wait for an appointment, with no choice of doctor, so no continuity of care. Very frustrating for patients and doctors alike. No wonder so many GPS are leaving. My daughter intends to refuse a partnership and keep all her options open for the foreseeable future.

Cold and sunny here after a few days of rain.

Hope all is quiet at the apartment complex.

Love,

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 2, 2019 06:54AM Rosiecat wrote:

Hi Mary,

I was interested in what you had to say about the private healthcare insurance system in the States. It sounds very confusing, especially when people are ill and perhaps finding all the paperwork, phone calls and travel too difficult to cope with. Our NHS is under threat. Cuts and underfunding has resulted in doctors, nurses and other staff walking out, exhausted and disillusioned. The NHS is the best thing about Britain and needs to be properly funded. It will not survive another 5 years of the present government. I'm so sad about it all.

Hope your arm is more flexible after all the physio. Please don't reply. Typing with your left hand just takes too much time and effort at present. I dread to think how you're going to write Christmas cards this year!

Love,

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 2, 2019 12:44PM sylviaexmouthuk wrote:

Hello Marias,

I do hope all will go well with your Xeloda treatments. You must be very fed up with the very long journey that you are on. Keep looking forward and telling yourself that you will get through this and be able to get back to a more normal life.

I am so sorry to read about all the dangerous troubles in your country. I do hope that there will be peace in the not too distant future. There seems to be trouble the world over and I do not know if it will ever end. There is this constant battle of the rich against the poor or less well off. Mankind is not a very nice species and in the end he will destroy himself and the planet.

Try to take care of yourself and concentrate on getting yourself better.

In the UK we are heading towards a General Election but I do not think it will solve our problems whatever the result.

That is all for now.

Abrazos

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 2, 2019 01:08PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your post. I am not surprised about the details you gave me from an article in The Guardian. I fear that we are reaching the point of collapse of the NHS. I think the Conservatives have been in power so often over the past 120 years (150 years in Devon) that they have completely undermined the NHS, the introduction of which they fought tooth and nail in 1945 and 1948. The Labour government has not been in power that much and any good work they do the Conservatives undo as soon as they are in power.

I remember being told that the same was done with British Rail and that it was deliberately run down in order to privatise it.

We have problems with our GP and I had a difficult time trying to get an appointment for Raymond. I phoned up and said I wanted an appointment for my husband for December 11th for a review of his medication as per his prescription. I was told the doctor just had tick the box and the prescription would continue. I replied that I was not interested in ticking the box and then doctor just handing out drugs for life. I said I wanted him to see the doctor and the doctor with whom we had registered. I was then told that appointments could only be made one week in advance and that I should phone back on Friday November 29th when appointments for the week beginning Monday December 9th would be released. I phoned back on this date (and had to listen to a long diatribe about do this and do that) before someone answered. I was then told the new appointments had not yet been released. I was getting quite fed up by this time. I was told that they would be released sometime that day but they could not tell me when. By this time I gave them a piece of my mind and I was told that there was nothing they could do about it, so I said that I suppose that when I phoned back I could be told all the appointments had gone. I was told that was entirely possible and there was nothing they could do about it. I can tell you I was hopping mad.

I relayed all this to my husband. He put the computer on and waited to see if appointments appeared there. By some miracle there was an appointment for December 11th at 3:20 pm with our doctor so we booked it in. we are now waiting to see if it actually happens. There were very few appointments with the doctor all week. Some here think our doctor is just a phantom of 'fake news'!

Until we lower our population and give motivation to doctors to see their patients in peace and quiet, nothing is going to work. I read the other day that GPs are trying to see 70 patients a day. That is shameful. Something is very wrong. It is a wonder we have any doctors at all. I think it is a deliberate ploy to privatisation.

It must be very frightening to be going through cancer treatment at the moment.

It is bitterly cold here in Exmouth and it makes you feel miserable.

Watching Boris Johnson perform on the Marr show yesterday was almost more than I could bear. He said the same thing over and over again.

That is all for now.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 4, 2019 06:19AM Rosiecat wrote:

Hello Sylvia,

I think that your experience trying to organise a GP appointment is a familiar one to most of us these days. My GPs are no longer sticking to the ridiculous 10 minute per appointment guideline and each slot is now 15 minutes or with all but one GP, as long as it takes. I'm very happy to sit in the waiting room. If a patient needs half an hour with their doctor, then so be it. Most people understand this and wait patiently, even so, our overworked GPs always apologise for the delay. What really makes me cross are the cruel articles in our 'daily right to know' rags that undermine our 'lazy, overpaid' GPs. My daughter is often still working after 8 pm as she needs to phone patients at home, write up notes and so on. As for the pay, it's actually very poor for the long hours and after many years spent in training. The Press is, for the most part, owned by wealthy Tories who have a financial interest in running down our doctors and our NHS. Run it down and sell it off. How can our health ever be sold off to the highest bidder? For profit organisations have no place in healthcare. I share your views on the privatisation of the railways.

I felt that I had to listed to Andrew Marr interviewing Johnson. I'm ashamed that this is our PM, how does he get away with it? What an example!

All of this is worrying for new cancer patients and those who have had their cancer treated, but will never be free of the fear of its returning. Breast cancer patients need to have their surgery quickly. Those of us who have their diagnosis and treatment in failing hospitals have no chance of this happening. Metaplastic breast cancer is known to return 'quickly and often' and sometimes, when my thoughts go to the darker places, I feel desperate about the slim chance of getting surgery in time. It all adds to the stress.

The weather here is very good for early December. Blue skies, sunny and not the slightest breeze. I do hope that your weather will improve soon. It doesn't take many days of cold weather and rain to make us feel depressed and miserable.

With love,

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 5, 2019 12:22PM sylviaexmouthuk wrote:

Sunrise at Exmouth this morning.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 5, 2019 12:37PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post. I do agree with everything you say about what is going on with the NHS and how overworked doctors and all the people involved with front line services are being overworked, suffering from burnout, and eventually leaving the profession.

I shall write more at the weekend when I hope to have more time to myself.

The very cold weather continues here and it is most unpleasant.

Take care.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 6, 2019 06:26AM Rosiecat wrote:

Hello Sylvia,

Really beautiful sunrise. Unfortunately followed by more cold weather. Wet and windy here.

Please don't spend your precious free time at the weekend on replying to my post. I'm off to look at Chris Woolams' latest news now.

Keep warm.

Love,

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 6, 2019 09:26AM Maryjv wrote:

Hello all! My name is Mary and I am 34 yrs old...find myself in the fight of my life!!! Recent diagnosis of idc...just learned yesterday it is TN and will start chemo in a few weeks...need to have US of lymph nodes to hopefully r/o any spread but the ct scans and bone scans are all clear. I am praying, keeping my faith and hoping this chemo can kick this cancers butt!!! Seems like life is just breeding by and I am trying to find my grounding again. So much I don’t know and so much fear but I need to stay positive and keep this smile on my face and know that I can get through this!!!
Dx 11/22/2019, IDC, Right, 1cm, Grade 3, ER-/PR-, HER2-
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Dec 6, 2019 12:24PM Rosiecat wrote:

Hi Mary,

In late August 2018 I found myself in a similar predicament to yours. Considering you only discovered that your tumour was TN yesterday, I'm not at all surprised that you've lost your grounding. Fear and panic are natural responses to diagnosis. We're all frightened at first when we know so little about how our disease will be dealt with, how we'll cope with treatment and so on. This will change.

When you meet with your oncologist he or she will explain which chemotherapy drugs will be right for you. The good news is that TN tumours usually respond well to chemotherapy. The other piece of good news is that after 5 years out, TN cancers tend not to come back. It's not absolutely guaranteed, but that's usually the case. Also, you won't need to take hormone suppressants for years on end. These come with unpleasant side effects that can be difficult to cope with.

When are you having your lump removed? It is usual to have the sentinel lymph node removed and tested at the same time, just to be sure there's no spread.

I hope you are able to take someone with you when you have hospital appointments, when your in shock and confused it can become difficult to make sense of what doctors are telling you. You can ask also ask for a copy of your pathology report. It's not easy to understand everything on it, but keep asking questions. If you feel you're not 'getting' something, no matter how trivial it might seem, ask.

It's usually the case that once we have a plan in place and begin treatment, we feel more positive. I was relieved to start chemotherapy as it meant that I was actually doing something to get rid of this thing. It was the waiting that really got to me. Test results especially.

At the moment you probably feel that you have a mountain to climb, I know I did. But it's all doable. I'm nearly 16 months out, Sylvia is 14 years out, Mary is over 5 years out and we're all getting on with life. Take a day at a time and keep the faith.

Hope to hear from you soon. Anything you want to know about our personal experiences of surgery, treatment and recovery, just ask. Sylvia has done a huge amount of research and is a mine of information.

I'll keep you in my prayers.

Love,

Gill X




Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 6, 2019 02:00PM sylviaexmouthuk wrote:

Hello Maryjv,

I just wanted to welcome you to our group and to say that we shall support and help you in any way that we can. Please give yourself plenty of time to let the diagnosis sink in as we all feel a sense of shock at a diagnosis of breast cancer. Tell yourself that you will get through this and that you will get back to a normal life. Your diagnosis is so recent and it must feel very frightening.

I read your details and see that you have invasive ductal carcinoma (IDC) which is the most common type of breast cancer. I have also read that your tumour status is triple negative, that is negative in oestrogen, progesterone and HER2. Do not be frightened about the tumour status. There are too many negative comments about this. I have always been positive about being triple negative. As Rosie said, it means you will not have to be on anti-hormonal medication, with nasty side effects, for years and years.

It is good news that all your CT scans and bone scans are clear.

Looking at the relatively small size of your tumour, 1 cm, I am surprised that you have not been offered surgery as a first step. Certainly in the UK the standard procedure used to be to have chemotherapy before surgery if a tumour was large. Otherwise it would be a lumpectomy or a mastectomy if desired and then radiotherapy. It could be that chemotherapy would be offered because of the TN status. You might want to ask about this.

Chemotherapy is the longest part of the treatment but you can get through it and you will not necessarily suffer some of the side effects.

Keep staying positive and just try to sort out the regimen of chemotherapy drugs that your oncologist wants to give you.

The most common drugs are as follows.

Doxorubicin (brand name Adriamycin).

Epirubicin (brand name Ellence). These two belong to the same group.

Cyclophosphomide (brand name Cytoxan).

Docetaxel (brand name Taxotere).

Paclitaxel (brand name Taxol). These two belong to the taxane group of drugs.

One regimen could be EC and then T. This is the regimen that I had. It means that I had epirubicin, with cyclophosphomide and then docetaxel (Taxotere).

I had a large tumour (6+ cms) which these drugs helped to shrink, but not completely, and I had then every three weeks.

You may have them every week instead of every three weeks.

I had six months of chemotherapy.

Before each three weekly session I had a blood test to make sure everything was in order before I could have the next infusion.

There are other chemotherapy drugs available but I think I have given you enough information for the moment, as too much information can make you confused.

Perhaps another time we can sort out the ways in which the chemotherapy drugs can be delivered.

I am over fourteen years out now and I started this thread back in 2010.

Keep with us. Keep positive and keep that smile on your face.

Love.

Sylvia xxxx


Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 7, 2019 05:59AM sylviaexmouthuk wrote:

Hello Gill,

I do not have anything more to add today. I am trying to tie up all the ends in our apartment complex and then working trough a list of things that Raymond and I need to sort out.

I was disgusted with the behaviour of Boris Johnson last night at the debate with Jeremy Corbyn. I did not think Johnson was reprimanded enough and stopped for going on and hogging time. Jeremy Corbyn was the clear winner in my opinion but of course our awful press are pro Boris Johnson. I cannot believe we may well end up with him as Prime Minister. What is the population thinking about?! The NHS is on the road to ruin. Can you believe that Johnson earned £700,000 this year outside of Parliament in addition to his Prime Minister's salary, all his expenses paid and all the freebies they get in Parliament. These people live in cloud cuckoo land and think they are being wonderful when they say they will increase the living wage to £10 an hour!

There is a little bit of sunshine here today.

Have a good weekend.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 8, 2019 08:50AM Maryjv wrote:

Thank you all🙏, My tumor is 1.8cm hence why they want to start chemo first....I have to get us of the lymph nodes because the mri showed several normal sized lymph nodes with thickening...I am keeping a positive mind set, we are all very different but optimistic that chemo is going to kick this cancers butt!!! I want to start chemo already to fight off the cancer so hope to start in the next two weeks Sylvia-I believe I am starting with the red devil and since I am a dietitian and I work with dialysis patients I am afraid of my exposure to infections...my oncologist recommends working through the chemo but I’m gonna ask more about this next week when I go for my chemo education ❤️
Dx 11/22/2019, IDC, Right, 1cm, Grade 3, ER-/PR-, HER2-
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Dec 8, 2019 10:07AM Rosiecat wrote:

Hi Mary,

Good to hear you sounding so positive. The sooner you get on with chemotherapy, the quicker it's over. I found that the red devil was aptly named. The first time I had it, the anti-sickness meds didn't work. However, the Oncologist prescribed much stronger meds and I sailed through the rest of chemotherapy. As for working through treatment, just see how it goes. If you need to take time off to rest, than do so. Listen to your body. I had my chemotherapy during Winter when there are always plenty of viruses about. I was told that if I caught something, then taking a week off from treatment wasn't a problem. You're a parent and catching colds, throat infections and so on will probably be difficult to avoid. However, as you work in a hospital with dialysis patients, you should double check. We are definitely more susceptible to infection whilst are white cell count is down.

I had 7 lymph nodes removed during my mastectomy, as the surgeon thought they looked as though they were hardening. A week later I was given the all clear, no cancer was found in any of them. I have never had any side effects from my partial clearance. No pain or lymphoedema. My underarm is still numb, but this causes no problems whatsoever.

Let us know what's happening and how you are coping.

Good luck!

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 8, 2019 04:23PM Rosiecat wrote:

Hello Sylvia,

I did watch the debate and was disappointed that Nick Robinson completely failed to control Johnson. The Prime Minister talks in sound bites, 'get brexit done' and 'oven ready deal' are repeated over and over again. He constantly talked over Mr Corbyn and refused to stop when Nick Robinson asked him to. The playground bully. People should be afraid of what Johnson will do if he's voted back in, but for some unfathomable reason the majority will carry on supporting him. I despair.

How can these wealthy toffs understand the need for a National Health Service? They don't use it, they've never used it and probably don't know anyone who has. The problem is, that too many people take the health service for granted, for most people it's always been there. They simply cannot envisage a time when it will cease to exist and so refuse to believe that anyone will sell it off. I no longer consider myself to be ill, but we all know that breast cancer can spread or return. That isn't something that I'll ever forget, but I had hoped that if the worst happened, I could rely on my doctors to help me to get better again. I think all of us with cancer of any type must be very worried for their future wellbeing. It's as though our security blanket is about to be pulled away.

On a much happier note, we put the Christmas tree and fairy lights up yesterday. Just sitting on the sofa, curtains closed, log fire roaring away, tree lit up and all's well with the world. Very different from this time last year when I couldn't see beyond my next cycle of chemotherapy. I hope this is exactly what Maryjv will be thinking by next Christmas, or sooner.

Looking after the apartment complex does seem to take up a lot of yours and Raymond's time. It must be very wearing especially at this time of year. I hope you have more time for yourselves very soon.

Take care.

Love,

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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11 hours ago sylviaexmouthuk wrote:

Hello Maryjv,

I just wanted to say that I had what they call the red devil. It is the name given to both epirubicin (Ellence) and doxorubicin (Adriamycin), because it colours the urine red, but it quickly disappears. I had it in combination with cyclophosphomide (Cytoxan) and I had absolutely no side effects from it. It is important to drink plenty of water during all the chemotherapy to keep hydrated. I was given a few pills to take for three days after each infusion. I did, of course, have the inevitable hair loss, which started quite quickly, but I wore a nice wig.

It is very important to get a few things sorted out before you start treatment. I was told to get a flu jab and to get the once in a lifetime pneumonia jab. I did this and so did my husband. I was also told to get any dental work done before beginning treatment because it cannot be done during treatment for fear of infection. I also did this.

I was advised to keep away from crowded places, such as supermarkets and public transport. I decided also to keep away from the GPs surgery, so I had a District nurse come in the day before each infusion was due to take a blood test which was sent straight to the hospital. The blood test was to make sure that everything was in order and that I could progress to the next infusion. If there were any problems with the blood test, the next infusion could be delayed. I was lucky not to have any problems and my red and white blood cells were always in order.

I was advised not to eat any salads or shellfish, again for fear of infection.

Obviously you have to keep at bay any friends or relatives with any kind of bug.

I was not working and do not think I would have had the energy to carry on teaching while going through treatment, but I know that people do carry on with their work. I do not think a school would have been a healthy environment for me.

I carried on with my healthy diet and also got a lot of information from Chris Woollams and icon magazine.

I did experience fatigue, but just rested as needed. I carried on as normally as possible.

I hope these bits of information help.

Do not be afraid to ask questions at your chemotherapy education appointment.

You will need to ask how your chemotherapy drugs are going to be administered, as there several ways this can be done. I had mine done by having a cannula inserted at each session on the top of my right hand and was then hooked up to the pump. This takes quite sometime but is painless.

The other options are a picc line or a port. You should ask about all of these things.

Sending you love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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10 hours ago sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post.

I do agree with absolutely everything you said about that debate. There is so much bias and prejudice from the media that you do wonder about calling ourselves a democracy and even more about British values! What are these values?

I agree with what you said about the National Health Service. It was the best thing that ever happened to this country and I am afraid we are going to lose it. I am not looking forward to Friday 13th when I fear that the ordinary people of this country will have voted in a useless toff who will sell us down the river. Like you, I do fear for what may happen to cancer patients in particular.

I was glad to know that you were enjoying being cosy in your home.

I have just received the latest edition of Vita magazine and there are some interesting articles in it. Of particular interest were three articles about Breast Cancer Now's researchers questions they are trying to answer.

1. Can we stop breast cancer coming back?

2. Can we harness the potential of new chemotherapies?

3. Can the immune system help to treat breast cancer?

I shall try to post some more information on all of this when I have more time.

That is all for now.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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5 hours ago Maryjv wrote:

Thank you all for your words of encouragement and support🙏❤️ I am having a port placed for chemo tx-and Sylvia def taking your advice and scheduled my dental apt ASAP! Thank you Rosie I am staying positive and trying to just remember to have serenity to accept the things I cannot change and the courage to change the things I can such as my diet and exercise before I start chemo!! Send all my love ❤️
Dx 11/22/2019, IDC, Right, 1cm, Grade 3, ER-/PR-, HER2-

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