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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 Jan 20, 2020 04:16PM 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 07 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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Jan 13, 2020 06:18AM - edited Jan 13, 2020 06:32AM by sylviaexmouthuk

Hello Gill,

I do agree that chemotherapy is a wild card and radiotherapy is the same. We do not really know what this treatment has done to our bodies and we do not know what is going to turn up over the years. We just have to live the day. It is useful if long term survivors pop in to tell us of any problems in their bodies that they attribute to their treatment. As I have said, I have peripheral neuropathy in the feet and my oncologist told me it was due to the taxane drugs, in my case docetaxel (Taxotere) and I was told there is no cure. I live with it and do ot expect it to go away. I do remember reading, I think in the book Let's Talk Lymphoedema, that the taxanes can also cause lymphoedema. As I have said before, I can manage the lymphoedema, which is very mild and I do not wear a compression sleeve and just moisturise my right arm very carefully, do some exercises and make sure I do not overdo anything with that arm. I do not have any chemo brain problems and never did. I do think the melanoma mole that I had removed back in 2017 was attributable to radiotherapy.

As you say, you are only ten months away from your final treatment so that is not a very long time to be back to normal.

We shall have to wait and see when we exit on January 31st at 11 pm, but I am not expecting anything from the present government. Did you see Boris Johnson with the new President of the EU, Ursula von der Leyen? He was about to tell lies about how they were at school together! He just cannot stop himself!

I agree with you about all this nonsense and the royal family. It is such a lot of nonsense that it takes centre stage when there is all this trouble with Iran and the US, the bush fires in Australia and the general mayhem in the world. We need a republic and elected representatives, not all these hangers on. It is beyond belief that the BBC can announce that the queen is queen of fifteen countries that the monarchy is respected world wide and cannot be compared to the more modern and discrete monarchies of northern Europe.

It is beyond belief that two young people are getting more coverage than the election of a new Labour leader. It is so important to have strong opposition to what is a Tory dictatorship based on 43% of the electorate.

It is true that there is a lot of information and a lot of experiences on this thread. I did actually go back and read the first ten pages and remembered some of the strong posters at that time, such as Karen3, Gillyone, josephine, MariaMalta, Chritina1961, Bak94, Mcrimmon, and so on. They were a mixture of Brits and Americans. I would love to know what has happened to them.

Let us hope that the newly diagnosed with TNBC will come and join us. That way we can keep up with new experiences, any new tips and new ways of dealing with things.

Here in Exmouth Monday morning is beginning wet and windy and very little sun. It makes you want to stay home.

I do hope you and Michael have a good week. Like you, Raymond and I have been busy all the time since retirement and our days seem to be a mixture of dealing with the apartment complex, doing the thread and personal chores etc.

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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Jan 14, 2020 02:46AM - edited Jan 14, 2020 05:08PM by Kathseward

hi everyone

Just had my visit with Onco and he doesn't want to see me anymore. Just mammograms and breast surgeon every 12 months! Not sure how I feell. Hope everyone is well?

cheers

Kath

Dx 7/6/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 7/6/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2016 AC + T (Taxol) Radiation Therapy 1/29/2017 Whole-breast: Breast, Chest wall
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Jan 14, 2020 06:10AM Rosiecat wrote:

Hi Kath,

Congratulations on getting through the final appointment with your Oncologist. I didn't see mine again after my last chemo. Like you, I only have a mammogram and see my surgeon once a year. Time soon passes.

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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Jan 14, 2020 06:25AM helenlouise wrote:

congratulations Kath! That’s great news :) 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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Jan 14, 2020 06:47AM Maryjv wrote:

congrats Cath!!!

Dx 11/22/2019, IDC, Right, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 12/30/2019 AC + T (Taxol)
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Jan 14, 2020 09:07AM maryna8 wrote:

hi Sylvia

Someone asked what I thought about Harry and Meghan leaving royal duties, and I have no opinion really. It wasn't as if he would ever be King, so does it really matter? I'm confident he won't have to go to work in a factory or anything, probably their lives will go on but in different surroundings, they will be famous and maybe will write a book, who knows? As you said, there are many momentous things going on, but thinking about royals absconding is easier.

You asked if I had read any books on BC lately, and I have not. This place is where I think about BC and talk about it with all of you, but in the world I do not talk about it a lot. I know personally about a dozen women who have had BC, (none TNBC), the lady at the Post Office had colon cancer, my friend Sharon has lung cancer, and Rose has Stage 4 lung cancer. I am going to a funeral this morning of my neighbors brother, he died of cancer, not sure what kind. It makes me uneasy to talk about my own bout with BC, except here with all of you. Here we all understand what each other has gone through, and are going through. I get a report on Medical news daily, and read about the latest research and trials. I suppose I am waiting for the magic bullet, but not here yet. Although news did make the papers this week that overall cancer deaths are down in the US, in part because people with Stage IV Lung cancer are being given drugs that extend their lives 5 years beyond diagnosis and longer. Sadly, the news is not as good for the UK, because people are often not being given the newer, more expensive drugs. I think perhaps your current NHS is in bad need of an overhaul, as it is is not working. A big problem. Our own system is not completely stable either, but so far the newer, more expensive drugs are being used.

I must stop for now, will be back later.

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 15, 2020 04:41AM sylviaexmouthuk wrote:

Hello Kath,

I am just popping in to say congratulations on everything being fine with your oncology appointment. You can now settle into a routine of your studying and profession. I am sure you are going to be successful at all of it.

Do not worry about the routine of check ups. It seems to be different in different countries and even hospitals. I am not sure what the routine is in the UK now because the National Health Service has a lot more problems than when I was diagnosed in 2005. At that time it seemed to be simple physical check ups for five years with hormonal breast cancer patients but I had them for ten years and I think that was because of the TNBC. These check ups for a few years alternated between the oncologist and the breast cancer consultant but they were just short physical ones feeling across the area of the breast cancer and around the lymph nodes. In between these check ups there were the usual mammograms and I went about every three years. After the first few years the physical check ups with the breast cancer surgeon stopped and I just continued yearly with the oncologist. After ten years I was discharged.

I think the most important is to listen to your body for anything that seems different and to do your own monthly physical check ups. The oncologist, when she did it, said she was looking for everything to be smooth over the surgery area, to feel for swollen lymph nodes under the arm, around the neck and in the groin.

I hope this helps.

That is about all for now. Put cancer in a dark corner and get on with your life and enjoy each day.

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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Jan 15, 2020 04:48AM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your interesting post that I shall answer later on today.

I thought you would be interested to know that I have received my first email from Chris Woollams for 2020. It has some very interesting articles. The ones that interest me most are

1. The healthiest diet in the world – various articles about the Mediterranean/Rainbow diet.

3. The latest news on your cancer – latest research and latest news on breast cancer.

5. Chinese medicine explained – traditional Chinese medicine approaches to cancer.

7. Twelve ways to cut your blood pressure – twelve ways to cut your blood pressure naturally.

8. All illness begins in the gut – all cancer begins in the gut.

Talk to you soon.

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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Jan 15, 2020 09:04AM maryna8 wrote:

hi Sylvia

I was just looking at Chris's latest post, there is a lot there, and I will delve into it later. Looks interesting.

Today looks to be another unseasonably warm day for us, I will attempt to do some things outside. Then tomorrow we start with colder Temps and the weekend promises snow, ice, rain and all sorts of weather. Why are the weeks flying by so fast?

Back to reading books on BC, I did go through quite a few of them but did not get much revelation. I donated all of them except for "Anti-Cancer, A New Way of Life", and also kept Woollams book "Everything you Need to Know to help you Beat Cancer." I also really liked the Symposium "The Truth About Cancer" I attended that was put on by Ty Bollinger. But everything seemed to boil down to the same thing, for me. Eat as well as you can, exercise to the extent that you can, and keep your fingers crossed! Until there is a magic bullet, that seems to be the way to go, when the diagnosis of TNBC is in the rear view mirror. I add to that a regular massage ( my shoulder's progress allowed me to have one yesterday, first time in 4 months), and I have acupuncture about once a month.

I do see my oncologist once a year, she orders an annual Mammogram and an MRI on the breast area, I am pretty sure she will cut me off in a few years. She did reduce my visits from twice a year to once last year.

Of course, if someone with TNBC has a recurrence, then it is a whole other story.

I am off for now, looks like we'll both be checking out Chris's post. Talk to you later,

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 15, 2020 09:16AM maryna8 wrote:

Hi Maryjv

I hope your treatment goes smoothly, I noticed you said your taste buds are getting dull. This makes it harder to eat but you will hopefully find some things that you can enjoy. For me it was eggs, I ate them every day during treatment. Also canned peaches, they slid down easily.

I understand you are working and I am glad you are doing so well!

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 15, 2020 01:42PM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your two posts. I agree that all this news about the Royal family is of no interest or importance with everything that is going on in the world. I think it is absurd that the Queen is queen of 15 different countries!!!

Like you, I find that so many people are ending up with cancer. I do not believe there will ever be a magic bullet as cancer cells are too complicated and they are a part of life. I did see a very interesting interview recently with Professor Paul Davies who has written a book entitled The Demon in the Universe (2020) which is all about this. I have written it down on my books to read but I do not know when I shall get to it. I shall try to research it on line.

I think all we can do is to try to have a healthy lifestyle, avoid negative stress and perhaps negative people and try to prevent it and if we get it to try to avoid metastases.

You are right when you say that cancer is not doing well in the UK. We tend to be at the bottom of the list when it comes to all aspects of cancer. I think the bulk of the population here are on very unhealthy diets and too many are overweight.

I am sure we shall discuss the various aspects of Chris Woollams' latest email in the weeks to come and I do hope our group will sign up to it. I think he has done a very good job in this first email of the year with consolidating the most important aspects of cancer.

I was particularly interested in the section entitled Breast Cancer – latest news, latest research. I went through the long list on this subject going from 2019 back through 2018, 2017, 2016, and 2015. He goes back even further through the years. Remember I discovered icon magazine way back in 2005 when I was first diagnosed. In the lists that I have looked through I cannot find any reference to hyperparathyroidism and breast cancer which I think probably played an important role in my own breast cancer diagnosis. He does mention quite a lot about gum disease and the part that it also plays in breast cancer. I have had this gum disease for a long time and apparently there is no cure.

All I need to do is add the role of stress and add it all up in my own case.

Acupuncture seems to play an important role in cancer treatment.

I put a lot of faith in ancient Chinese medicine.

Your weather seems to be all over the place. Ours is much the same. Today was a dry day with some sunshine and no wind, so Raymond and I did spend some time in the town.

That is about all for now.

Thinking of you.

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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Jan 15, 2020 04:22PM Maryjv wrote:

thank you Mary! Def taking it easy, feel very tired today...glad I have a supportive boss who said go home when you need! Just taking this one day at a time

Dx 11/22/2019, IDC, Right, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 12/30/2019 AC + T (Taxol)
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Jan 18, 2020 10:05AM Rosiecat wrote:

Hello Sylvia,

Apologies for not responding to your comment sooner. I've had so little time this week. I know that you are snowed under too.

I'm glad that you managed to escape 'chemo brain'. It's actually quite a problem, especially when it comes to my archive work or trying to hold an intelligent conversation with someone who doesn't know that I've had chemotherapy. With people who do know, I just tap my head and they understand. I have to hope that this is a temporary deficit. My specialist oncology nurse did warn me.

I didn't know that you had a melanoma mole, quite recently too. I do feel that radiotherapy is risky, we know that it can damage tissue permanently and hinder healing if further surgery is needed at a later date. Most hospitals now avoid radiation following mastectomy and chemotherapy. My cancer was on the left and I wouldn't have wanted to subject my heart to any extra stress.

I don't believe that Johnson is up to negotiating brexit. He simply doesn't have the intellect necessary. Lies might have won him a GE but the EU president, in fact any representative from the EU negotiating team, will see straight through him. I'm shocked that he's been able to get away with so much. I wonder where all the money the public has collected for Big Ben to chime will end up?Apparently we are now to be subjected to a clock projected on a wall to celebrate brexit. The Tory Party is beginning to sound like a group of mixed infants with very large bank accounts.

When I first joined the thread I read many of the original posts as they were still relevant. Treatment hasn't changed a great deal, though the treatment of chemotherapy induced nausea has improved greatly. Like you, I wonder where these people are now. I'm sure you got to know some of them well, not just as posters, but as friends.

I'm glad the weather in Exmouth has improved a little. It's sunny here but cold and due to grow colder and windier next week. Not good news for wig wearers.

Enjoy the rest of your weekend.

Love,

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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Jan 19, 2020 10:48PM KUNALGOLDY wrote:

Hello Hanieh,

It's actually a nice and useful piece of information. I'm happy that you simply shared this useful information with us. Please stay us up to date like this. thank you soo much

I AM AND I WILL:

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Jan 20, 2020 08:19AM - edited Jan 20, 2020 08:22AM by sylviaexmouthuk

Hello Gill,

Thank you for your latest post. As for chemo brain, just remember that you are not far out from treatment and that all these effects from the drugs will take time to improve.

Patients find radiotherapy much easier and the treatment is relatively short, but it is still lethal. It was in 2017 that one of the doctors at my GP surgery noticed a mole on my inner right arm and was obviously concerned. I had gone to him to check up something abut my lymphoedema in the right arm, which he said was all in order. He asked to photograph the mole and to send it to the mole clinic. Ironically this clinic was right next to the lymphoedema department. Ironically, as well, this GP said it was not melanoma.

My own GP had, shortly before, dismissed the mole, said it was not melanoma, and to come back in three months!

To cut a long story short, I went to the mole clinic, had surgery to cut out the mole, the verdict was melanoma and that I needed a deeper cut to clear everything. I had a second surgery, was sent home with prophylactic antibiotics in case I developed cellulitis in the lymphoedema arm. Everything was fine and I did not need them. I had a final appointment at the clinic and was told everything was clear and that I did not need to return. You can imagine how relieved I felt. The nurse guaranteed I would be fine. She then added that I might like to know that some people develop sarcoma cancer in the bone years after diagnosis etc. I thought to myself that is exactly what I do not need.

I did recount all this in 2017 and early 18, but I can see that you were not here then.

It was also in October 2017 that I developed lymphoedema in the right arm after I had had a flu shot in the left arm. No one could explain this really but I was told that the shot had probably caused an over abundance of antibodies because I had not had a flu shot since 2005 when I had to have one before starting my breast cancer treatment.

Such are the joys of being diagnosed with breast cancer!

Some months ago I read somewhere that once you have had cancer you are considered to be legally disabled. Have you ever heard of this?

I do agree with you about Boris Johnson. He did get only 43% of the vote in the General Election, so more people were against him than for him! He won because of the unfair system we have of distributing seats. In fact, Theresa May had more or less the same percentage but ended up with a minority government. This is what we call "democracy". It was not so much that the Conservatives won but that Labour lost and I think that was because they would not support the referendum result. Whatever side we were supporting, we had to respect the result.

I was glad to read that you read some of the original posts. I do remember when Peter was posting on here (Peter and Liz) for his wife that he told me he had read all of the posts from the beginning and I congratulated him on that. He wrote some interesting posts and has popped back now and again. He lived in Norfolk, so may have been at the same hospital as you.

It is very cold here but dry. We had a beautiful sunrise this morning.

Have you read the latest email from Chris Woollams?

What do you make of the post that was removed by the Moderators? I saw under the name that it started off "Hello Hanieh". That makes me really puzzled as we are all wondering where Hanieh is.

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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Jan 20, 2020 08:38AM sylviaexmouthuk wrote:

Hello Mary,

I was wondering if you remember what Hanieh's user name was? I cannot remember it and do not know how long it is since she posted.

I hope you are fine and that you will get in touch soon.

Thinking of you.

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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Jan 20, 2020 08:42AM Rosiecat wrote:

Hello Sylvia,

Just a very quick response for now. I noticed that the post to Hanieh had been removed. I wondered if the removal might be a safety issue. Perhaps the poster could let us know?

I'll write more later in the week. I have my zoledronic acid infusion on Thursday. This will give me the opportunity to talk to someone about the itching I have at night, it's keeping me awake, I know that it could mean liver problems.

Love,

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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Jan 20, 2020 08:42AM sylviaexmouthuk wrote:

Hello Mary,

I have just found Hanieh's user id and it is Honeytagh. I was surprised to find that she had been viewing as recently as December 2019 but not posting. It does show us that she is still around but we do not know what her health status is and how life is treating her.

I do hope she and her family are fine and I do wonder what that deleted post was all about.

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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Jan 20, 2020 03:55PM - edited Jan 20, 2020 03:57PM by sylviaexmouthuk

Yet another sunrise!

Hello everyone,

This thread is way too quiet!

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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Jan 22, 2020 07:13AM Rosiecat wrote:

Hello Sylvia,

Beautiful Winter sunrise in Exmouth.

Your mole melanoma was quite a saga. Did it change colour or develop uneven edges? I needed a suspicious mole removing about 15 years ago, it looked perfectly safe but started bleeding one day. My GP removed it herself at the surgery, which was a lot easier than a trip to hospital. Why this service is no longer available I have no idea, I don't think shortage of staff was a factor. My mole turned out to be nothing to worry about, but I do know how lethal malignant melanoma can be from my time as a hospice volunteer. I think the nurse might have spared you the sarcoma detail particularly when she'd just guaranteed you were safe.

My understanding of the legally disabled label after cancer diagnosis is that it was designed to prevent employers from dismissing people with cancer. Employees with cancer now have the same legal protection as all disabled employees. However, for people with cancer who are unable to continue working either on the advice of their doctor or because their cancer is terminal, DWP can make life very difficult. I've read some appalling stories about the brutal behaviour of DWP.

I haven't had time to read Chris Woollams' newsletter yet but I thought the article concerning the relationship between gut health and all illness looked interesting. The need for universal antibiotics so often during my chemotherapy has certainly had an adverse impact on my health.

I recently watched a BBC programme about the covering up of many years of abuse inflicted on young men by Anglican Bishop Peter Ball. We all know that abuse in the Church happens, but what was so striking about this case was the interventions made by the British Establishment to prevent police officers from doing their job and putting this man behind bars. The ex Archbishop of Canterbury, Lord Carey, Prince Charles and several Anglican Bishops were involved in supporting Bishop Peter Ball. We should never underestimate the power of the Establishment it really is a case of one rule for them and another for the rest of us. This is why I'm so concerned that Dominic Cummings seems determined to undermine the BBC. The BBC has faults but it is a vital source of information and investigation not just in the UK but around the world. Any Tory interference in the BBC will be a disaster for democracy.

I wonder how Maryjv is coping with her chemotherapy? She'll have had her second dose by now. Also thinking about Mary. I know she's very busy at the moment. I'm hoping that her shoulder will have fully recovered in time for Spring, it's been such a long haul.

Weather here is very cold. I noticed that the weather forecast for Norwich last night was 5C but it was down to 1C by 5pm and icy this morning. At least it's dry.

Keep warm.

Much love,

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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Jan 22, 2020 09:30AM Maryjv wrote:

Hello lovely ladies! The weather here in San Antonio is very cold and rainy! Gill, thank you for thinking of me ❤️ I do read all of your posts and find such inspiration from all of your words! I am about to go back for AC round 3 just minor fatigue but battling through!! And my work and boss have just been super supportive

Dx 11/22/2019, IDC, Right, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 12/30/2019 AC + T (Taxol)
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Jan 22, 2020 10:19AM sylviaexmouthuk wrote:

Hello Gill,

I have just noticed that you posted to me after I had posted. It was very strange about the post to Hanieh that was deleted by the Community. The next day I noticed it was there again. I did a PM to the Moderators asking for an explanation, but unusually for them I have not had a reply. I noticed that the person who posted seems to have joined just to post to Hanieh and I found that strange because Hanieh had not posted in a long time here and according to her profile had viewed recently but you cannot work out where. I do not like these strange goings on.

I do hope all will go well with your zolendronic acid infusion on Thursday. This seems to be very popular now but I am not sure what to think about it. I know I would never have it.

I do hope everyone in our group is fine as I find the thread strangely silent.

I am in a down mood and so fed up with the long winter.

Have you been listening to the programmes about George Orwell? They have been on Radio 4 and are very interesting. There have been five 15 minute broadcasts at 9:45 am and four 45 minute dramas at 2:15 pm.

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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Jan 22, 2020 11:35AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post and I am so glad you liked the photograph of the sunrise.

As for the mole, no it did not change colour but it was a bit irregular.

Thank you for your explanation of what legally disabled means with reference to cancer. I have also heard nasty tales about the DWP.

There has not been much comment about Chris Woollams first email of the year and that has surprised me because there is so much in it and because so much that he said years ago is only just about being accepted by orthodox medicine. I would not have thought that anyone would deny the health benefits of the Mediterranean/ Rainbow Diet. I was particularly interested in one article that I printed out entitled Mediterranean Diet alters microbiome to lower breast cancer risk. It is well worth reading.

"Previous research studies have shown that breast tissue has its own microbiome and that this differs between healthy breasts and those with cancer. Those with cancer have much lower levels of the species lactobacillus."

"The science is consistent. Diet has now been proven many times to alter the composition of the gut microbiome. Losses in the gut microbiome are known to be reflected in the microbiome of the breast in cancer patients". You need to eat olive oil, oily fish, nuts and seeds, fruit and vegetables, whole grains etc. and limit your meat consumption.

I do hope we shall have some comments on the article entitled Breast Cancer – latest news, latest research.

I have printed so much out but I shall comment on more later and I hope others will join in.

I do agree with what you say about the power of the establishment and how they can cover up anything they like. You are right it is one rule for them and another for the rest of us.

I do agree with what you say about the BBC. It needs to remain free of any political interference.

There are so many pieces of news that just die away.

Look at what is happening to Julian Assange. What about the so-called poisoning in Salisbury? What about the journalist killed in the Saudian Embassy. There are so many unfinished stories. That report about Russian interference has still not been published.

I watched today's Prime Minister's Questions with disgust. The Prime Minister was his usual evasive self and did not answer any of Jeremy Corbyn's excellent questions. Boris Johnson acted like a cheer leader with his little group of Yes people.

The weather is cold here and it is so difficult to be positive about anything.

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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Jan 22, 2020 04:07PM maryna8 wrote:

Hi Sylvia

Well I better make some noise, you said it's too quiet!

Today is very gloomy here too, having a little rain, a little sleet, nothing dramatic. I like some pretty snow once in a while, I don't dare say it out loud, people just want nothing to do with it. I have thought about it, and it seems we are all so BUSY that nobody wants to be inconvenienced or, God forbid, stay at home for a day. We did have enough snow earlier in the week so I could go into the woods and roam around for a bit, it was so quiet. That snow didn't last long, so to myself once in a while, I ask the gray clouds to drop some more snow!

I thought after Christmas things would calm down, but it hasn't happened, except that I'm not shopping as much hurrah.

We are having our interminable impeachment trial, mostly it's giving some nasty people television time. Such a farce and a waste of time. I really don't like politicians.

I missed the messages involving Hanieh. What a mystery it all is! Was she posting on this thread, or somewhere else?

I keep meaning to get back to Woollams, I hope I get to it before he sends another. I can't see any downside to the Mediterranean Diet, I like it because it's well-rounded, balanced and common sense.

I must close for now, and I remain your dear friend, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 23, 2020 07:12AM Rosiecat wrote:

Hi Maryjv,

You're moving through chemo so quickly. It's good to hear that you have an understanding boss. Rest when you need to and just keep on doing what you are doing.

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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Jan 23, 2020 08:13AM Rosiecat wrote:

Hello Sylvia,

Thank you for your last post. I agree that Chris Woollams' newsletter is packed with useful information. I'm still unable to have the healthy diet I had before C.Difficile. I miss the leafy green vegetables, tomatoes, fruit and nuts. The evidence for the Mediterranean diet's role in disease prevention is overwhelming, so why aren't schools serving it? It's assumed that parents wouldn't be impressed and couldn't afford it, I don't think this is necessarily the case. There have been tales of mums turning up at the school gates at lunchtime and feeding their offspring on pizzas, chips cakes and pies but I certainly haven't seen it here.

Like you and Mary, I really can't imagine what the post about Hanieh was about or why it was removed. The second post is concerning. KUNALGOLDY has clearly had a response and is replying via the thread. it may be that both women are keeping under the radar for some reason.

I gave up on PMQs. Johnson wouldn't answer the questions and was both sneering and arrogant. Jeremy Corbyn was quietly determined which doesn't work with Johnson. If only Harriet Harmer was younger and in the running for Labour leader. I hope Keir Starmer will be elected, as a barrister he'll be used to spotting lies and dealing with them publicly.


The brutal murder of the journalist at the Saudi embassy has been glossed over by just about everyone. Oil wins over human rights every time. How many innocent people have been killed over the West's access to oil? Johnson stated at one point, that the Russian report was there for people to see. It isn't. The fact that it hasn't been published tells me that there's something in it that Cummings and Johnson are afraid of us seeing.

Like you, I find all this cold, dull weather very depressing. Winter seems to be endless this year, probably because September and October were so grim and we're used to September being warm and October being reasonable.

Look after yourself.

Much love,

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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Jan 23, 2020 03:34PM sylviaexmouthuk wrote:

Hello Mary,

It was nice to see you back on the thread.

It looks as if we are all finding the weather gloomy.

We have most of the channels here covering the impeachment trial and it does seem a waste of time and money. We are gradually heading towards January 31st when we shall leave the EU in theory but the whole thing will probably drag on for years. It is possible that we leave on a "no deal". Anything can happen with Boris Johnson in control. I do not think you are alone in not liking politicians!

As for Hanieh, it is all a bit strange and I do wonder who this poster is that suddenly appeared. I do not think she was responding to a post from Hanieh. I checked up Hanieh's profile and her last post was to all of us back in February 2019. I saw that she had viewed as recently as late December 2019. When a person views the date appears but not what the person was viewing. As for the mystery poster she joined and posted the same day on our thread. She/he has not been seen since and I have no idea what her post means. At first it was deleted by the community and then it reappeared. I did ask the moderators why it had been deleted and I got no reply, which is also very unusual.

I hope we shall all eventually get to talk about the first email of the year from Chris Woollams of Cancer Active. There is a lot of interest in the email itself and many parts to click on for more details.

I also have found some interesting information in an edition of the New Scientist magazine and two more editions of this magazine have since appeared in January. I have not yet bought these because they are rather expensive.

I do hope you are gradually getting back to normal.

I have been quite fed up lately with a lot of hassle here and I do need to find some time for some relaxation and reading.

That is about all for now. Thinking of you.

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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Jan 23, 2020 03:41PM sylviaexmouthuk wrote:

Hello Maryjv,

I hope all goes well (went well?) with your third AC treatment. Please let us know if you have any side effects other than the fatigue you are already experiencing. This is useful so that we can help in any way and can help others going through the treatment.

I do admire you that you have been able to work while going through treatment.

Take care and remember that side effects may happen as the treatment progresses. Drink plenty of water!

Thinking of you.

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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Jan 23, 2020 03:51PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post.

I do agree that parents should be giving their children balanced meals and not all the fast foods that are being served up. Vegetables and fruit are not that expensive compared to a lot of junk food. When I was a child we had the same things on our plate as our parents and not all these children menus that are now available. Junk food is not food!

As for Hanieh, I cannot see that KUNALGOLDY is responding to a post from Hanieh. If you read my post to Mary you will see what I mean.

I agree that PMQs is a load of rubbish and I resent all the money they are being paid for yapping on all day long!

I think we are all agreed that we are fed up with the gloomy, dull cold weather. At lest here I can see some bulbs emerging.

That is all for this evening.

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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Jan 24, 2020 09:26AM Rosiecat wrote:

Hello Sylvia,

I had another look at KUNALGOLDY's post to Hanieh. It looks to me as though Hanieh has been in touch, but not via this site. KUNALGOLDY'S second post seems to be for Hanieh's eyes only. It's all very mysterious and I can't help wondering if Hanieh is restricted as to how and where she communicates now than Iran has serious political problems once more. This is all very perplexing.

Apparently we shouldn't worry too much about coronavirus in the UK as Matthew Hancock has said our NHS is prepared. This might be a fib though.

I had by IV zoledronic acid yesterday and suffered no obvious side effects, I can't say that the hunt for a usable vein was much fun though. The veins on my hand and arm have all but disappeared after chemotherapy. Found one eventually, after some very painful trial and error. My blood test two days earlier wasn't much better There was a child having her bloods taken at the same time and she cried and screamed as it was so painful and traumatic for her. Her poor mother was close to tears, as was I.

Like you I'm enjoying the celebration of the 70th anniversary of George Orwell's death. I've always liked 'Coming Up For Air' which has been serialised on radio 4. I'm going to work my way through everything on offer over the weekend. 'Animal Farm' could teach us a lot about what is planned for the ordinary working folk, the old, the frail and the sick. I admire Orwell's insight which has great relevance today. He understood the human condition, man's thirst for power and the ruthlessness of those who held that power. Nothing really changes.

There were rumours earlier that a polar storm was heading our way. I was quite looking forward to some snow. Instead, we can expect more cold and more rain.

Enjoy your weekend.

Much love,

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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