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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 May 21, 2021 06:07AM 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 15 years and 11 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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May 11, 2021 12:36PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post. You always have something interesting to say. I cannot understand why people are voting for Boris. It can only be because he got Brexit done, but has not done much since, but made a load of promises. The strong working class that used to be the backbone of Labour Party supporters no longer exists. We are such a mixed society now that the votes will be all mixed up, depending on race, religion, and goodness only knows what else. Boris is just a jokester and he must be having a laugh that the worst government I have ever known cannot be kicked out by the Labour Party. As for Keir Starmer, I think he should have resigned. He comes over as too establishment and I am not impressed with his Shadow Cabinet. The fact that one of his advisers is Peter Mandelson says it all for me.

I am not surprised about what you said regarding the Queen Elizabeth hospital in Kings Lynn. Why is this not plastered all over the front of the newspapers? We know why, do we not? We do not have an objective press.

It has seemed a long day today and the week seems long to me. There is a lot to do, but I do not feel like doing it.

Did you see the programme last night about Michael of Kent?! Did you see the other one about the people connected to the Royals. It is mainly through the Germans and Russians.

That is about all for now. Please keep us posted about Michael.

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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May 13, 2021 06:13AM Rosiecat wrote:

Hello Sylvia,

Your thinking regarding the Labour leadership is very close to my own. I believe Starmer to be bright, honest (for a politician) but he's just not a leader. No killer instinct I suppose. That he has the disgraced Mandelson as his advisor is shocking. Johnson is to allow an inquiry into the appalling way he handled Covid. The inquiry will take another couple of years before the findings are published and by then we'll have had another election.

According to the Eastern Daily Press, Matt Hancock is refusing to give straight answers to questions regarding the crumbling Queen Elizabeth Hospital. There are now 131 steel props in place, including in the kitchen. I don't think I would risk being treated there, but there's no alternative for those living in King's Lynn unless they are able to pay.

Talking of paying for treatment, Michael's private cardiology appointment is for late afternoon next Wednesday. If he needs surgery we won't have the means to pay. It appears that people really don't care about the state of the NHS except those who work in it and those who need treatment.You get what you vote for.

I'm not at all surprised by the antics of Prince Michael of Kent. He's always been short of money! I didn't see the programme about the Royal family's connection with Russians and Germans. I shall see if it's still available to watch online.

Very little new to say about breast cancer. I would like to see some realistic reporting on the serious risks associated - both short and longer term - with chemotherapy and radiotherapy. Cancer information sites like Macmillan, Cancer Research, Cancer Now etc skim over any bad news, as do the booklets handed out by the breast cancer clinic when we're first diagnosed. I find the lack of proper information frustrating, we are not children!

Weather sunny and dry here. Seems very cool for May, especially after last year.

Wishing you and Raymond a peaceful, warm and sunny weekend.

Love,

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 14, 2021 08:32AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post. I think that we are stuck with Boris Johnson until the next election unless something of the various alleged wrong-doings leave him having to resign. He seems to be Mr Teflon! As for Labour, I think they have had it for the foreseeable future. They got it wrong with sitting on the fence for Brexit and wrong about what the working classes want. I think the Blairites are creeping back in. I was surprised to see on the news that Stephen Kinnock had a position in the Shadow Cabinet. That says it all!

I am not surprised that the Eastern Daily Press is not being given any straight answers by Matt Hancock. Where on earth did this Tory Cabinet come from?

I do hope Michael gets some satisfaction from his private cardiology appointment next Wednesday afternoon.

I agree with you about breast cancer. There is very little new to say about it.

I do wonder seriously about keeping this thread going. We seem to be having a dialogue with each other.

I am still trying to get things sorted out for my cousin in London.

Raymond is very tired but we try to carry on. Somehow all the treatment he went through for his triple bypass and the medication that he was given, seem to have done something with his blood pressure. For all of his life it was normal, even excellent, and then it got messed up in the hospital. Now it goes too low if he takes his beta blockers, and too high if he stays off them. He has been 'summoned' for the health check the nurse has with elderly patients on medication. Since when were nurses in charge of patients' medication. We have been told it is to take a blood test, blood pressure and discuss his medication, and that it has to be done before he puts in his next prescription.

I asked the person on the phone at the surgery why I never get called for such a check up and she said it was because I was not on any prescription medication. I said that Raymond had had a blood test last year but that I had not had one since 2014 and that as for blood pressure we check our own every week as well as our weight. There was no reply to all of this!

When we phone the surgery we no longer get the automatic answering service delivering all the long-winded stuff about Covid etc., followed by press this and press that, but we get the busy signal for hours on end. Have you experienced this?

We are both in fairly low moods at the state of our country and the lack of fairness, equality and lack of democracy and freedom of expression.

Finally, you might be interested in the programme My5 on the computer entitled Katharine of Kent. I shall leave you to form your own opinion.

That is about all for now.

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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May 15, 2021 09:00AM Rosiecat wrote:

Hello Sylvia,

As you stay, in regard to politics it looks as though England is stuck with the status quo for now.

The Covid variant first found in India seems to have been found in most parts of England and there are worrying clusters in several areas. Why on earth weren't airports closed weeks ago and why didn't the Government learn anything from the examples set by Australia and New Zealand? I don't think I could face any more lockdowns. Another lockdown would be a huge disaster for the NHS and the almost five million people on the waiting lists. What an utter mess. The worst of it is that had we not been allowed to unlock for Christmas and kept the airports closed against the new variant then we could have gone back to a relatively normal life in late Spring. I'm so angry.

Life seems to have been very difficult for you for well over a year now. Your cousin should be receiving the help he requires without anyone needing to involving you. I'm amazed that a nurse is handling Raymond's medication. He's clearly experiencing problems with beta blockers and needs to see his GP or, even better, a cardiologist. I take Candesartan Cilexetil 4mg and they maintain my blood pressure at a healthy level without sudden falls or rises.

My GP doesn't accept phone calls as everything is organised via email and you get a phone call from a doctor if it's considered necessary or an email response from a doctor. If a patient needs a face to face appointment with their GP that is decided during a telephone consultation.

I'm not surprised that you're both in a low mood about the state of the country. How easy it has been to destroy democracy, healthcare, education and so on. I've been worried and frightened for many months now. All this added stress in addition to dealing with metaplastic cancer and the after effects of chemotherapy is very depressing.

I do think the thread is fizzling out. Other threads are a lot less active too. So much useful and honest information on the site in general and I'm always interested in the additional articles published here by the moderators.

Miserable grey and wet weekend here and this looks as though the entire week will be wet and colder than normal for May.

I'll have a look at Katherine of Kent.

Take care both of you,

Love,

Gill xxx




Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 16, 2021 02:29AM SondraF wrote:

Just checking in to say hello and commiserate on the general state of things. Not least of all this really, truly crappy weather. I guess the very warm Spring we got last year in compensation for the newness of lockdown was an anomaly. The grey and rain this winter was really tough for me (and on a lot of people I imagine) so to have a few weeks of sun in April and now back to this grim late March-ish look is not cool. I'm so tired of shivering under a coat to eat cold food just for the chance to socialise with friends!

I went into London on Friday to stop at the office for a meeting, have lunch with a workmate, and visit a very specific shop (had to match some embroidery colours for a project) in Soho and its shocking what central London has become. Oxford Street seems to be lined now with Mike Ashford's low-rent brands (I swear every other shop was a Sports Direct!), and it all just feels really really cheap, like a giant sized market stall. With the Boo Hoo lot buying Debenhams thats essentially what it is, now. All the cool eateries in Soho are currently closed,hell it seemed like even the porn shops in the basements were closed! I hiked down to Westminster for the Tube and there really is no one around in the government offices, although the police protection around Number 10 was substantial. Everything looked closed and abandoned. On the plus side, though, Borough Market was easy to navigate and my favorite social coffee enterprise, which makes the best cup in town, is still open and cranking away.

The elections weren't really a surprise but Im not entirely sure what people in places like Hartlepool are expecting to happen. I did read one analysis whereby they may have had local Labour leadership for years who weren't ever able to get anything done so out of desperation they thought they would vote Tory in the hope someone would notice. To flag - the nomination of the new chair of the media regulator should be coming soon as well, which could be an extra nail in the coffin if its someone very ah, Conservative-friendly. There is just no joy or certainty about anything right now, in fact, you read about Priti Patel's latest power trip and Border Force harassing EU folks at the border and detaining them and think cripes, I don't recall signing up to live in a third-world police state!

As for health care - I recently had an ooph done privately and even then there was a timing mix up as my surgery was pushed later in the day (not communicated), confusion over discharge (was someone going to give me some food? Did they need to take my blood pressure? oh, you are just waiting for me to be picked up I guess..), no take-home after-care instructions. Sure its a small surgery but i mean give me a pamphlet or something about what to do with the dressings! When can i exercise? Should I lift anything? When will the surgeon call to check in? Is spotting normal? I had to look up Memorial-Sloan Kettering's pamphlet online for guidance. At this point I dont think it matters if you are private/NHS - there is a train coming down the tracks quickly and it doesnt matter if you are a patient or not, its going to affect EVERYONE.

And now to the Indian variant - I've seen how the math works in regards to transmission and if it is indeed 50% more transmissible then yeah, they are in trouble and further easing will have to be delayed. Its simple maths but that doesn't make it easier to accept.

I hope all on the thread are able to keep putting one foot in front of the other and may sunny days soon be here again.

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/28/2019 Femara (letrozole) Targeted Therapy 11/28/2019 Ibrance (palbociclib) Surgery Prophylactic ovary removal
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May 16, 2021 04:56AM sylviaexmouthuk wrote:

Hello SondraF,

I have just opened up the computer and read your really interesting post. I do love your sense of humour during these very trying times.

I think we can all agree that we are very fed up with the weather. I woke up this morning, had a look out of the window and saw yet more rain here in Devon. It is now pouring down and has probably settled in for the day. It seems that, with the weather now, it is all or nothing. We are now getting the weather we should have had in April. It is almost as if Spring has been cancelled. It does not prevent the Brits in Exmouth sitting out in the main square where cafes and restaurants seem to be putting more and more chairs outside to keep their businesses going. It is a case of mad dogs and Englishmen go out in the mid-day rain and are we having fun yet? Last week we had open marquees in the main square, so crowds could sit together inside these, but could not go inside cafes or restaurants! They are rooms with draughts!

I was very interested in what you said about going into London. Oxford Street sounds really awful. London is so different to my younger days spent there. There has been such a dumbing down of clothing and it really hits you when you see how smartly people were dressed back in the fifties. In fact, there seems to be no quality to anything these days. Everything seems to be trashy.

I did have to laugh at what you said about the porn shops in Soho being closed.

I do wonder what all the politicians are really doing these days, apart from living it up!

I think that the recent elections were really won on the fact that Boris 'got Brexit done' and that Labour sat on the sidelines. Labour took all those voters for granted. I do not think Boris will keep any of his promises. We are certainly losing our freedom, especially our freedom of expression.

I am not surprised at your tale of woe with the health care system. I am sure that Gill will have something to say about what you have been through. My husband and I certainly experienced it during his four week stay in hospital in January, February 2020. He had absolutely no after care and trying to get through to our GP Surgery is a major undertaking. The line seems to be busy all day and you only get through when it is closed!

I do agree that it seems it is not much better with private care.

As for Covid and the Indian variant, I think we are in trouble in this country. I think there has been too much emphasis on vaccination curing everything. The so-called briefings on the television are just too much to bear. They are like bad comedy trios. John Cleese and the Two Ronnies they are not!

I do hope all has gone well with your breast cancer treatment. Are you taking any medication for it now or are you in a rest period?

I hope you will come back and post again.

All the very best.

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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May 16, 2021 07:28AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post.

From what was said in the Queen's speech it looks as though Parliament (the Waffle shop!) will be having a debate about getting rid of the fixed term parliament, so it could be if the vote is in favour of getting rid of it, that Boris will call an early election, while the going is good for him. I heard on the news yesterday that if the election were called today, the Tories would walk it. I think it was said that they would have a majority of 122. I cannot understand why ordinary people are voting against their own interests. It seems to say that Labour is not seen to represent ordinary people any more and that it represents, what is being quoted as, the Islington elite.

I do agree with you about the Covid variant, named the Indian variant. I do wish the proper names of these variants would be given instead of countries. I think giving them the names of countries is going to cause a lot of trouble. The so-named Kent, South African, Brazil etc. all have different numbers and are, of course, different. Common sense tells me the so-called Indian variant is going to spread rapidly, especially with 'liberation day' tomorrow. Our government is always taking action too late or as the jargon says, behind the curve rather than in front of it. I think the figures are going to be manipulated to suit the government. I think we are probably heading for local lock-downs, which will not work.

I think that the disaster in the NHS has already happened. I do not think the system will ever catch up with the five million people on the waiting list. I had an interesting conversation on the phone with a friend of mine recently, who is in the NHS system for various treatments. He thinks the NHS may have drawn a line under the five million on waiting lists and started to deal with those coming on to the waiting lists. Having had various appointments delayed etc., he was surprised that having recently seen a doctor, he got an appointment for a scan very quickly afterwards.

Raymond and I are taking everything in our stride as much as we can. The worst year was definitely 2020 with Raymond ending up having to be taken to Hammersmith Hospital for triple bypass surgery and the wasted three weeks of waiting before hand at the RD&E. Of course, in that January and February we were barely told about Covid and I think Raymond was lucky to get back home before Covid burst on the scene. Of course, the news was delayed because it seems it was around the previous November.

I was only too pleased to be there for my cousin. He is all alone and I was determined to make sure that he did not become a victim of the system. I was involved from the very beginning and the hospital, social workers etc. have all kept in touch with me throughout the last six months. I have documented everything and have over 120 A4 pages. I could turn it into a novel!

As for Raymond, problems with his beta blockers began after the doctor said he could stop taking them because new evidence showed that beta blockers, the cardio-selective ones, did not strengthen the heart unless 20 mg were taken daily and that their other use, control of blood pressure at smaller doses, were not of any purpose to Raymond, because he did not have high blood pressure and so the beta blocker made it go too low, making him feel dizzy and unsteady, and thus risking a fall. What I think was wrong was that he was told to stop them when the leaflet says not to do this but come off gradually. He has been doing this himself.

You are lucky that your GP is using emails as a way of contact. We do not have this at our surgery. You can only phone and the phone is always busy with no menu coming up, except when the surgery is closed!

You will see from the great post from Sondra that we are not alone in our despair at the state of the country. Where have our standards gone? Just look at the yobbish behaviour of the football fans in Glasgow last night. One of my brothers tells me of a walk through a local park where yobs were using catapults to fire stones at the heads of nearby swans. He also told me of a walk through the park where a crowd of people were eating and drinking and just got up leaving all their rubbish behind on the grass. My brother cleared it all up and took it to the litter collector. Where has the self respect of people gone?

I do agree about the thread and other threads but I think life has been absorbed by the coronavirus and all the problems it has brought with it. I do agree that there is a lot of information here and it is always worth reading anything published by the moderators. I like the idea of the moderators and they way they keep an eye on the thread. I often look at Active Topics and also keep an eye on All Topics.

Do you know anything about Li-Fraumini Syndrome and the variant TP53 gene? Apparently mutations in a gene on chromosome 17, known as P53, gives an increased risk of cancer over your lifetime and some cancers in particular, including breast cancer. TP53 is the genetic blueprint for a protein P53.

I do not know if I have explained that well, but out of interest I looked on the internet about it, after a conversation with a friend, and there is lots about it, but I could not find it in my medical book. As you know, patients get their pathology reports now but I was not offered mine back in 2005. I would be interested to know if anyone has anything about this in their pathology reports. If I have understood it correctly it is also implicated in rare cancers. It would seem to me that we should all be tested for it. As you know, I did ask for genetic testing, but was told at the time that I could not have it on the NHS because patients with faulty genes usually develop breast cancer at a younger age. As you know, I am interested in all things cancer. This particular syndrome with its hereditary implications is very interesting.

I do hope you and Michael have managed to have a pleasant weekend. Raymond and I switched off problems for a while and watched a couple of episodes last night of the sitcom After Henry on Forces TV channel. It does give us a good laugh.

We shall be thinking of you on Wednesday when Michael is due for his consultation.

I do hope Mary is alright and that she will be back to posting soon and I hope we shall hear from Kath and Helenlouise soon, from their common-sense country. I have been watching a programme on PBS America about the history of Australia, which I found most interesting.

Take care.

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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May 16, 2021 07:32AM sylviaexmouthuk wrote:

Hello adagio,

I hope you are well. We are hearing tales of how bad Covid is in Canada. I hope you and your family are managing to keep clear of it.

Look forward to hearing from 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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May 17, 2021 11:38AM Rosiecat wrote:

Hello Sondra,

I predicted that private health care would be overwhelmed now that the NHS is no longer coping ( putting it mildly) and waiting lists are endless. Even so, your experience was a bit much considering the money the private sector charges. I had my mastectomy privately two and a half years ago and was very impressed, especially with the food. Had wine with a lovely lunch just before I left the next day.

As for the state of the country, no one I talk to in true blue Norfolk seems to care much. So Boris might tell a few porkies, he's a right laugh, bit of a lad and he got Brexit done. My feelings about our loathsome Prime Minister and his Cabinet of chancers is unprintable. The Labour Party really don't get a look in. New BBC chairman is an extremely wealthy Tory, most of the Press is right wing and a hopeless first past the post voting system. All but two of the elected Mayors were Labour, so Johnson is now set to look at how he can change the system before it happens again.

Sad that London is looking so empty and run down. Shops selling cheap brands are lining just about every high street in the land. We have a huge Primark in Norwich close to where Debenhams used to be. House of Fraser closing down and I'm guessing that John Lewis will be axed before too long.. Everything's doom and gloom at the moment and that's without Covid infections rising once again. I suppose we'll just have to keep on going and see what happens next. Good weather would help.

Enjoyed reading your post,drop in again soon.

Love,

Gill X



Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 17, 2021 12:28PM Rosiecat wrote:

Hello Sylvia,

Johnson will call a General election while the majority of voters are still intoxicated by getting brexit done and the magnificent vaccine roll out. The fact that the NHS actually organised vaccine centres and volunteers is neither here nor there for most people. Successful vaccine administration = NHS. Failed 37 billion failed track and trace = Matthew Hancock.

The Covid variant that originated in India is already here in Norwich and it's 50% more infections than other variants. We just have to hope that the vaccines protect us from serious illness or death. I was looking forward to a more normal life, but will remain very cautious. I don't think it's all over by a long way. We just have to hope that hospitals will remain open for all patients this time and not just those with Covid. I can't imagine the despair people languishing at the end of a long waiting list with cancer or serious heart problems must be feeling. I think your friend might be right about the NHS drawing a line under many of the 5 million on the waiting list. I can see that it might make some kind of sense to let those who are now too ill to be treated go. Then move on to those more recently diagnosed and still treatable. I certainly don't like that idea at all but we're kidding ourselves if we think that the lists can ever be tackled properly and peoples' health isn't something doctors can play catch-up with. What an appalling dilemma.

I was interested in what you said about the TP53 gene. I need to do some research, I've been tied up with gardening between the showers and trying to catch up with the archive and housework so it's time I concentrated on something else for a while.

I discovered a small, hard and immobile lump on my left shoulder blade last week. I was going to leave it for a while to see if it went away or became less pronounced but I think it would be safer if I saw my GP if I can. Spindle cell metaplastic breast cancer often travels to the lung and it's possible that this may have happened. I was warned about the very high possibility of metaplastic cancer recurrence in the first three years. I'm trying not to think about it and hoping for the best.

That's about all for now.

Keep well.

Love,

Gill xxx



Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 18, 2021 06:34AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post. They are always interesting.

As for Boris Johnson, I still cannot believe he is the Prime Minister. Our country is in a sorry state if this can happen and Labour had better pull its socks up before it disappears and we have this Tory Fiefdom for ever.

I do not think we are being given the facts about the so called Indian Variant and I still do not believe that the number of deaths since the pandemic began is the real number. They subtracted a lot of deaths earlier on.

I do not think the NHS will ever get through the waiting lists.

I do think it would be very interesting to discuss the TP53 gene and this Li Fraumeni syndrome.

I found TP53 gene in my BMA A-Z Family Medical Encyclopedia. This is what it says:

A gene associated with many types of cancer, including breast cancer, bladder cancer, and colon cancer. Normally this gene provides instructions for making a protein called tumour protein 53, which suppresses the formation of tumours, but when certain mutations of the TP53 gene occur, tumour suppression is impaired, resulting in a greater risk of developing cancer.

I was so sorry to read that you have discovered a small hard immobile lump on your left shoulder blade. I do hope you will get this checked out.

I have to close now, but will post again later.

Take care, keep safe.

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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May 18, 2021 07:54AM sylviaexmouthuk wrote:

Hello everyone,

I am posting this to say that I am going to post my story of my breast cancer journey once again so that it is there for newcomers to see and to show them that they can get through the journey just like I did. I decided to do this after receiving a PM from a lady who had discovered this on a previous posting.

This lady was very interested to know about my diet and exercise during treatment. I have told her about the Mediterranean/Rainbow diet that you should all know about by now. I carried on with my usual diet during treatment and as you will know I do not eat meat, poultry and dairy products, but I do eat oily fish, organic eggs from time to time, and that I have nuts and seeds, beans and pulses, soy products such as Sojade organic soy yoghurt and Alpro unsweetened soy milk, and of course plenty of fruit and vegetables. I steer clear of sugar. I eat high fibre wholewheat or rye bread.

We would all like to hear about your own personal eating habits.

That is all for today.

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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May 18, 2021 07:58AM sylviaexmouthuk wrote:

I have a date that will be forever etched in my mind and that is June 20th, 2005. That is the date on which I was diagnosed with breast cancer. I did this after walking around with a lump in my right breast for a long time, that deep down I knew would bring bad news. On June 20th I saw my GP and after examining my breast and under my arm she told me that she thought I had breast cancer. I remember being very silent and I heard her say that under our NHS (National Health Service) system there would be a two week wait and then I would be called to the hospital. I walked out of her room to where my husband was waiting for me and I just told him the news and about the two week wait. I thought this was a long time and so my husband and I went back into the GP's consulting room and asked how I could get it confirmed sooner. She referred me straight away to a breast cancer consultant who worked in the NHS and privately and within two hours I was with that consultant.

I felt at ease with her from the very beginning and she would be my breast cancer consultant surgeon for the next eight years. Emotionally I was in turmoil but it manifested itself that day in quietness. The consultant examined me and did a fine needle aspiration as she told me she was certain I had breast cancer but she now had to prove it. She made an appointment for me to see her at her breast cancer clinic for the newly diagnosed the next morning, a Tuesday. That night I slept poorly and my mind kept saying I had cancer.

I was already finding this very difficult as I had never been ill in my life. That Tuesday was probably the worst day in all of my treatment. My emotions were out of control and I was teary, low in spirits and afraid. I remember sitting down at the consultant's clinic and just looking at everyone there. I was called in and was told to go upstairs for a mammogram and ultrasound. My consultant kindly had a young nurse tail me for the day. I tried to talk with her but I was overwhelmed with emotion that day as I had the mammogram, ultrasound and core biopsy. I kept weeping and developed a bad headache. After these procedures it was back to the consultant for a summing up. She told me I had breast cancer and that I would need surgery, chemotherapy and radiotherapy. She further told me to come back and see her the following week when I had had time to digest it all.

That evening I remember sitting in the bedroom and crying till I could cry no more. In fact I did not cry any more during my eighteen months of treatment.

Looking back, I made some decisions that were wrong and I would say to anyone facing a diagnosis of breast cancer or discovering a lump not to delay but to get it sorted out straight away. I delayed seeing my GP and then I delayed having my treatment. This is not something that I would do again.

The next day I was more together and since I am studious and inquisitive, immediately started to read up about breast cancer. I read a book entitled The Cancer Directory by Dr Rosy Daniels and read it from cover to cover so that when I went back to the hospital I had already written to my consultant asking all sorts of questions about stage, grade, receptor status etc. When I saw the consultant she had the paper with her and went through answers with me. She told me that it was most unusual to be asked all these questions in such a scientific way and that patients usually just wanted to go through the treatment not knowing much. I would advise all newly diagnosed patients to get informed about what is happening to them and to be in control all the time. Back in 2005 I was not into computers and did not research the internet and in a way I am glad that I did not, but took my information from a reliable book. I think that at that time breast cancer was still very much in the dark ages in the UK, especially when compared to the US. Even now I find on the forum that American patients are probably told much more than they are in the UK, although I think UK patients now get more information from their medical team and in a way they have to be given this because the patients are much more informed.

At that time I remember my consultant telling me that the prognosis was not good because my breast cancer was not hormonal and she could not give me something like tamoxifen to help. She told me I was oestrogen and progesterone negative. Nothing about triple negative as such was mentioned. I was told I had invasive ductal carcinoma. It was not until much later when I finally agreed to treatment that I was told that I was HER2 negative and that it was a good thing to be so. None of this meant much to me at the time but it certainly would later. I would tell all newly diagnosed patients to make sure they have this information.

In the UK we are told we can get second opinions, that we have the right to do it, but I am not sure whether doctors like it. I think the medical profession has had to open up more in the UK because of the internet and forums like this, where patients are getting lots of information and can speak up for themselves to doctors.

I finally started six months of chemotherapy in November 2005 after I had been through consultations with alternative doctors, a nutritionist and a homoeopathic consultant to whom my breast cancer consultant referred me. Both told me I needed to have orthodox treatment and I now felt ready for it. The homoeopathic consultant kept me as a patient throughout my orthodox treatment and prescribed things as adjuncts to my treatment.

Once I started the chemotherapy I was fine and was told that I had sailed through it. The worst part was losing my hair but I soon got used to wearing a lovely wig. I know that many women are really frightened of chemotherapy but there is no need to be. Find out what drugs you are going to be given and why, listen to your oncologist and get information and tips from those that have been through it. You can get through chemotherapy. There is life after it.

Three weeks after chemotherapy finished I was in hospital for five days for a mastectomy of the right breast. Again I would say to all newly diagnosed patients that you can do this and live without a breast.

I finished treatment with three weeks of radiotherapy with boosters and found time went very quickly with this. It is tiring going to the hospital five days a week for three weeks but once there the treatment is quickly over. Again, I would say listen to your oncologist and radiologist because they know what they are doing.

When all this treatment comes to an end you can feel cut off because you are no longer busy going to the hospital. You go into the next phase which is living as normally as possible and then going for your regular visits with the oncologist and the breast cancer surgeon. We all get anxious as the visits come due but most of the time we get good news and come out of the hospital feeling exalted.

Next June 20th it will be ten years since my diagnosis. Since then I have done everything to keep myself healthy and fit, I have lived life normally and I continue to do everything that I did before. I know I cannot take anything for granted but I just take one day at a time. I was given a poor prognosis but I think that was because, unlike the majority of women, I was not diagnosed with hormonal breast cancer. I am glad that I have not had to take any medication to keep the cancer at bay, so I can say that I am positive about having been diagnosed with what is now commonly called triple negative.

Looking back I can say that I had a dream team for my treatment. I think my breast cancer consultant and oncologist are dedicated women who go that extra mile. I was also glad that I was offered and accepted to have hospiscare nurses come to visit me when I felt the need. They provided invaluable help with any problems I had, whether financial, emotional or medical.

As for food during chemotherapy I just kept to the plain foods that I had always liked. I think this is very personal and would say that you have to eat whatever will get you through your treatment. I know mashed potatoes with some poached fish helped me a lot, but mainly I kept to my normal diet, which is to avoid meat and dairy products.

Most of my treatment was during the winter months so the sun was not a problem, but in my everyday life now I am very vigilant about exposing myself to the sun. I have just what I need to keep up my vitamin D and take vitamin supplements.

I think the UK commitment to the environment could be improved but in my everyday life I try to avoid chemicals as much as I can.

I think that the breast cancer charities do a lot of good in this country but I think even more emphasis on cancer prevention is needed. I also think that women need to help themselves as well by following a healthy diet, not smoking, not drinking alcohol (or very little), exercising, keeping to a healthy weight and avoiding chemicals in their everyday life in the home. Very recently I read that reducing calorie intake to keep weight down has been found to help with reducing metastases especially in those with triple negative breast cancer. We have a serious problem with obesity in the UK.

Most hospitals here have charities offering all kinds of support to cancer patients.

I discovered Breastcancer.org in 2009 when I had finished treatment. I started reading the various threads and thought we were in the dark ages here in the UK with triple negative breast cancer in particular and decided to start the UK thread. I had no idea that it would still be going after nearly four years and I have felt so enriched by all the women from all over the world that have been on the thread at various times.

Breastcancer.org is a wonderful forum and providing a marvelous service.

--sylviaexmouthuk, United Kingdom


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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May 18, 2021 02:07PM sylviaexmouthuk wrote:

Hello Gill,

I am sorry I have not been able to get back to you today. I hope to have more time tomorrow.

I do hope all will go well tomorrow with Michael and I hope you will be able to get an appointment for yourself as soon as possible. I did see on the television a snippet saying that patients must be allowed to have face to face appointments with their GPs. Let us hope this gets back to normal quickly.

I suppose you have heard the latest news about one million hospitalisations in 2019 due to obesity. This evening I heard a brief interview with doctor Van Tuleken about over-processed foods being largely responsible for obesity.

Talk again 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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May 19, 2021 05:31AM Rosiecat wrote:

Hello Sylvia,

Thought you might be interested in this study concerning the impact of the TP53 gene on breast cancer. It's very complicated but well worth reading:

https://breast-cancer-research.biomedcentral.com/a...

I'm going to read through it again to get it straight in my head.

I've emailed my GP and requested a face to face appointment, we shall see.... I read that GPs must allow face to face appointments if patients request one and we shall soon be allowed to talk to receptionists too. Like you, many patients just get the engaged tone when calling, so that won't work. Perhaps the surgery doors will be unlocked at long last?

Michael has just heard from the Cardiology Unit at the hospital. He had complained about the useless online booking system with no appointment ever available. He's been offered a telephone appointment with a Cardiologist in early July. Needless to say he'll be keeping his private face to face appointment today.

The Labour Party need a new leader and they should cut all links with Mandelson, no one trusts him. At this rate Labour will be unelectable for years to come. In the meantime we should all be concerned by the way Johnson has closed down any idea of Government accountability. Our freedom of speech and the right to protest is under serious threat and we may well see another lockdown within weeks. I'm deeply suspicious about the way Covid has been handled. We are an Island, we could and should have been able to keep the highly contagious so called Indian variant out or at the very least limited it to a small number of cases. Like you, I suspect that deaths from Covid are higher than we are led to believe.

Weather here is dull but at least it isn't raining. We had very heavy thundery showers throughout yesterday.

That's about all for today. Wish the thread would liven up.

Take care of yourself and Raymond.

Love,

Gill xxx



Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 21, 2021 06:07AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for the link to the TP53 gene. I shall have a look at it over the weekend.

I will be interested to see whether you get a face to face appointment with your GP.

I hope all went well with Michael's appointment.

As for government and political parties in general, I have given up all hope. We are a country in need of great transformation into a modern one.

Did you see the Panorama programme this past week on BBC1 about all the dishonesty and covering up in the NHS. It was conducted by a GP and was excellent but very frightening for patients going through the system.

I do agree that the thread is not really working at the moment. There are still quite a lot of viewing but certainly not enough posting. It could be that patients now have enough information about the basics of the cancer journey and are able to cope alone. There has not been that much change, certainly since I was diagnosed in June 2005. If anything has changed it has been the introduction of more and more pills post the standard surgery, chemotherapy and radiotherapy. What is essential is early diagnosis and if possible just minimal surgery. Chemotherapy and radiotherapy certainly do the most damage as far as the basic journey is concerned. Neuropathy and lymphoedema are certainly serious and as for what else has happened inside our bodies, such as heart damage, does not bear thinking about.

The emphasis at present is still Covid with more and more details coming out about what exactly long Covid means, such as serious damage to the heart, not to mention the brain and the association with dementia.

The wind is awful today here. It is really draining.

Many thanks for your dedication to the thread.

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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May 22, 2021 11:34AM maryna8 wrote:

Sylvia, Gill and all here

Hello! I am back, seems like it's been a while. I went on my little journey to visit family, and when I came back I had a few days free and then it was time for another week of our quarterly meetings. My sis-in-law from out East came for the first time in a year, and there was much too-ing and fro-ing and sitting in meetings. Also we had a meeting with our State Governor and his wife and much snapping of photographs. I haven't seen many of them, if I get my hands on a decent one I will post it.

Gill, I am sorry you have a lump that you are worried about, I hope you can see to it very soon and find that it is only an annoyance. I also hope that Michael is okay and things are getting better for him. I continue to be confounded by state of the NHS, I saw that Sondra commented that even Private hospitals are not much better at providing after-care for her.

Sylvia, I read that Raymond is doing self-care with his prescription, I don't blame him because here too, it seems that people are put on medications and left on them for years and perhaps they are not needed any more. It looks like you are your usual brilliant self, taking care of your world. Here, too, we are having dreary damp days, few downpours but it just seems to always be drippy. Like you, I had no genetic work done when my tumor and lymph nodes were taken out. Shortly after my bout with BC, this genetic work seemed to become widespread. I looked over the latest posting from the Mods on TNBC and it didn't mean much to me because I don't know where I fit into all this. Very interesting however.

I had a Breast MRI yesterday, I have been having a Mammogram in the fall of the year and then an MRI in the spring. They do this because of my very dense remaining breast which does not show up tumors in the tissue very well in Mammogram. In hindsight, I should have had both breasts removed at the time of my mastectomy, but I just wanted things over quickly, with the shortest recovery. Next week I will see my new Oncologist for an bi-annual check-up.

In a couple of weeks I am going to see my Orthopedic Doc to see if I can get some therapy on my shoulder. The therapy came to an abrupt end when Covid came to town last year, we were at the point where she was going to decide if I needed more work. So at the time I was happy to be done with it, but I have noticed the shoulder that had 2 surgeries is so weak, my movement is okay but I feel like the 90-pound weakling. I think a couple months of therapy a couple of times a week might get me going to work on my strength. We will see.

I have had no problem getting into a Doctor, but the docs here are paid by our insurers. Of course, we have to pay our insurers. I have noticed that the amount that the Docs end up getting is much less than it used to be, I suppose that's why the Docs see so many patients in a day and time spent with patients is very short. I have noticed that getting in to see some specialists, such as a Neurologist, takes months and months. No wonder many docs are going into Plastic Surgery, where they can charge much more for services!

I read a little about your politics in my newspaper, but find what you ladies say about it to be much more interesting. It does seem you are all of the same mind about it, it would be interesting to have a poster with the opposite opinion!

Also, welcome to Sondra, it's nice to have another poster and very interesting to read about the streets of London. I think the Cheapness of everything is pervasive, not much anymore seems to be of quality. I still hope to get to London and surrounds someday! Darn Covid.

I am going for now, and I will join in again later,

Love, 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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May 22, 2021 12:47PM sylviaexmouthuk wrote:

Hello Mary,

I was delighted to see that you had come back to us. We do miss you on the thread.

I shall answer your very interesting post tomorrow as I have been busy today sorting out various things. I do like discussing all sorts of things and am always interested in reading opposing views on all subjects. It would be interesting to hear from Peter of PeterandLiz because I think he has opposing views to me and Gill. I do think there are serious problems in the NHS and do not know if they can ever be solved or whether it is possible to get through all the millions of waiting patients on the NHS.

I have been researching something that is spreading through India now that they are calling Black Fungus, a side effect from Covid treatment that forms part of Long Covid. The infestion is called mucormycosis and is potentially fatal. It is due, apparently, to high blood sugar and indiscrimiate use of steroids in Covid-19 patients.

Steroids raise blood sugar and cause lowered immunity leading to infections, especially in diabetics. This infection starts in the nose and spreads to the eyes and brain and can mean eyes have to be removed. I read a lot about it today after watching the news. I learned from my reading that India is the diabetes capital of the world. I was not that surprised because my nurse friend who works for a cardiology consultant told me that lots of her cadiac patients have diabetes and are from India.

I must stop now but I shall post again tomorrow. I do hope your return will bring back adagio, Kath, Helenlouise and others.

We are all broad-minded on this thread and everybody is welcome. We may have different views on many things but what we all share and have in common is breast cancer.

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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May 23, 2021 07:42AM sylviaexmouthuk wrote:

Hello everyone,

Has anyone posted here since my last post of yesterday? When I switched on the computer this morning it said there was a new post but when I looked there was nothing. Also, it started at the top of the last page instead of going to the last post at the bottom.

I hope you are all having a relaxing Sunday.

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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May 23, 2021 07:53AM Kathseward wrote:

hi everyone

Hope u are all doing ok It’s still crazy here and have been focused on getting immunisation rate higher in Australia and coping with outbreaks through good public health strategy.

I have just completed my last assignment for uni and after I do my clinical assessment next week I will have completed my NP masters. It feels surreal after 3 years of hard slog!

Off to Adelaide next week while my daughter has her 4 th child. Hope everyone is well?

Much love

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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May 23, 2021 09:31AM sylviaexmouthuk wrote:

Hello Mary,

It sounds as though you have been going through a very busy time.

As far as our NHS is concerned, we do not allow ourselves to be bullied. We do think patients, on the whole, are being put on too many pills and that they all have nasty side effects and often work in conflict with one an other and negate one another's effects. Raymond is just taking soluble aspirin and a minimum dose of a beta blocker, which he sometimes does not take because it lowers his blood pressure too much. It is meant for patients with high blood pressure, which Raymond has never had but you get nowhere by telling anyone this.

It is true that patients are left on medication for years and this cannot be right. I have asked quite a few people what pills they are taking and everyone seems to be taking the same! I am pretty sure I am the only person in our complex not taking any medication! The general pattern seems to be aspirin, anticoagulants, blood pressure lowering pills, statins, beta blockers and acid reflux pills which cause a cough and then something to stop that cough! I forgot to add medication for diabetes from metformin to insulin. Someone I know is taking 15 pills a day plus two different sorts of insulin. Can that be right?

I think that, from what I have been reading, steroids are being dished out as frequently as antibiotics, and we all know the problems of antibiotic resistance. It was only this week that I read that steroids lower your immune system. I already know from different people that they cause you to put on weight, can cause deposits of fat on your body and also can cause diabetes. You can see from my previous post that use of steroids to help coronavirus can cause mucormycosis and diabetes, not to mention a lowered immune system.

You mentioned that you did not have any genetic work done. I did ask about it back when I was diagnosed and was given an appointment with a genetic nurse. She asked me various questions but said she did not think I needed a referral to a consultant geneticist because of my age. She said that people with faulty genes got breast cancer at a young age. I was thinking, there are always exceptions! I do not think genetic testing was widespread at the time. I now think it should be routine, especially in light of what I was reading recently about Li Fraumeni Syndrome. I have mentioned this in a recent post.

You mentioned that you had looked at the latest posting from the Mods on TNBC. I have looked at that as well but I am not sure what to make of it either. I do think that a lot of how you fare when dealing with breast cancer, and indeed other cancers, may depend on your state of health and your immune system at the time, your weight, what kind of diet you have been on prior to diagnosis, how you look after yourself during treatment and afterwards, and whether you make any changes to negative factors.

I hope you get good results from your breast MRI scan. I have no idea what goes on these days for breast cancer treatment under the NHS but given there are 5 million patients on waiting lists for NHS treatment, I would not think it is very thorough and that Covid will be blamed for any failings, but the NHS was a mess before Covid.

I do hope, also, that you get some therapy for your shoulder.

I was interested to know about the situation of your doctors with regard to payment from the insurers. Under the NHS your appointment with your GP is supposed to last only ten minutes and you can only mention one thing at that appointment. That is all a bit rushed. At present, because of Covid, you can only get a telephone appointment if you can get through! You may be asked to send photographs if your symptoms can be seen. The GP decides through the telephone appointment whether you need to be seen face to face.

Do not believe everything you read in the newspapers about politics or anything. It is all biased as to whether you are on the left or the right. Most of our newspapers are on the right and very establishment. The only slightly to the left would appear to be The Guardian and the Daily Mirror. This week all the news has been about the interview Diana gave to the BBC (1995) in which she revealed how badly she had been treated. I think she was in earnest and told the truth. Goodness only knows what the establishment is trying to prove now.

I do not know if "all of the ladies" are of the same mind. It sounds as though Gill, Sondra and I are, and remember we are three thinking English women who are living through it. Let us hope an opposer posts.

That is about all for now. It is another dreary, wet and windy day in Exmouth. Apparently we have had the wettest May on record. Everything is so mixed up. April was so dry. I think we are getting March winds and April showers in May and the Mayflowers are coming forth slowly.

Take care Mary and try to keep in touch. I do follow the political scene in the US. I am not sure what to make of Biden. All I know is that he is not Donald Trump and not half as lively!

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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May 23, 2021 10:09AM maryna8 wrote:

Hi Sylvia

I think you and Kath posted at the same time, then you posted to me right. Thus there was a new post but you didn't see it. You should see it now.

I shall look forward to reading your post when I return from going to Sunday Church!

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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May 23, 2021 02:50PM sylviaexmouthuk wrote:

Hello Gill,

I am just wondering whether everything is alright with you and with Michael. I do hope it is and that you are just taking a well deserved rest.

You will be glad to see that Mary has posted after such a long break.

I do hope I shall hear from you soon if only to tell me you are both OK.

Thinking of 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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May 23, 2021 02:56PM sylviaexmouthuk wrote:

Hello Kath,

Thank you for posting when I know you are very busy. Do you have the Indian virus in Australia? We have quite a lot of cases here and we now have a Yorkshire variant. Is there no end to this?

Congratulations on being so close to your NP Masters. You have worked so hard for it.

I hope you have a good time in Adelaide next week while your daughter has her fourth child.

Life is fairly unexciting here as everyone waits for the supposed liberation day on June 21st when all restrictions with Covid are supposed to be lifted. I shall believe it when it happens, but I have my doubts.

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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May 26, 2021 06:47AM Rosiecat wrote:

Hello Sylvia,

Apologies for not responding to your post earlier, it's been rather a hectic week so far. In addition, we've had no hot water since the end of last week unless we have the log burner on. The house is unbearably hot. The shower has also ground to a halt and plumbers are either booked up for weeks to come or don't return calls, though I've finally found someone in the village who is able to come the week after next.

My GP appointment on Monday morning was helpful. She was able to pull the the lump on my back away from the bone, which apparently means that it's very unlikely to be cancer. She's writing to my breast surgeon and expects him to either arrange a face to face appointment and an ultrasound or at least a telephone consultation. I wouldn't have thought that a telephone call would be of any use at all. We shall see.

Michael has seen a cardiologist privately and has an echocardiogram and 72 hour heart monitor booked for this Saturday morning. I'm just relieved that things are moving at last. I can't imagine the stress of being a cancer patient stuck on a long waiting list. So much cancer screening has been delayed and some doctors are predicting a cancer time bomb about to explode. Why on earth didn't the UK and other first world countries plan for a Pandemic that would inevitably happen? No one in Government listened to scientists, epidemiologists or hospital managers. Mock pandemic situations were set up in Health Trusts throughout England and shortages of PPE, ICU beds, doctors nurses and so on were well documented. The Government failed to act because planning would cost money and expensive vanity projects and Brexit were deemed more important.

After seeing the GP we drove to Southwold for the day. It poured with rain when we were halfway there but miraculously stopped once we arrived. The town seemed to be back to normal with people out and about as usual. Not many on the beach as it was very cool but Michael and I had a good long walk along the sand and collected a few interesting shells and pebbles. I think we both needed some stress free time together and the sea always lifts my mood.

Hope you and Raymond are able to spend some time enjoying Exmouth before the crowds arrive.

Take care of each other.

Love,

Gill xxx



Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 26, 2021 08:54AM Rosiecat wrote:

Hi Mary,

What an exciting life you lead. Very impressed that you had a meeting with your State Governor. You must let us see the photos.

I can understand why you need more therapy on your shoulder. You've had two very complex surgeries and we certainly heal more slowly the older we are - though you're in your prime of course. Joan Collins once said that 60 was the new 40. Not sure what she's saying now that she's in her late eighties. I suppose we use our shoulders more than any other joint. I'm going to be a lot more careful after learning about your experience. Good luck with getting your strength back.

From what I've read or heard from friends, dense breast tissue is examined via ultrasound scan rather than MRI. Your screenings, blood tests and consultations post cancer seem to be much more frequent than in the UK. Here it's 5 years of annual examinations with our breast surgeon and 5 annual mammograms and then out unless something's wrong. I think I prefer the idea of being free after five years. Mammograms continue to be scheduled every three years for as long as we want them. I'm not sure of the statistics but most people seem to find their own breast cancer during routine self checking. Very few seem to be found by scheduled mammograms - but that might just be my experience.

Spring has been a complete washout here. However, met. experts are predicting a hot dry Summer. Hope so as I plan to be out a lot. I've overdosed on lockdown, doom and gloom and I'm beginning to feel old and miserable, ready for a change.

Keep well Mary, I always look forward to your posts.

Love,

Gill xxx


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 27, 2021 06:37AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post.

I was sorry to read that you are having such a difficult time. I do hope you get your hot water back and your shower repaired. I know that all our contractors here are very busy as everyone is chasing them after lock-down. We are probably short of plumbers and electricians as we seem to be short of everything except politicians and bureaucrats! There is too much hot air and not enough hot water!

I was glad to read that it looks like good news with regard to the lump on your back. What do you think it is? I do hope you get to see your breast surgeon face to face as I think telephone consultations are of no use. Keep us informed.

I was glad to read that there has been some action with Michael. I do hope you have good news from the echocardiogram and the 72 hour heart monitor. This seems to be standard practice.

It seems almost inevitable that there is going to be a cancer time bomb and I do not think is was necessary. Heart trouble and cancer are the leading causes of death everywhere, so they should not have been neglected. We seem to be short of everything and I certainly see no sign of all those doctors and nurses that Boris was going to magic out of the air. The shortages were part of the news this morning on the radio.

Did you listen to any of Dominic Cummings interrogation before those two committees. I must say he is definitely a much better speaker that Boris or Hancock and he was very calm. He was more believable than Boris. I just cannot believe the shambles that is our government, it is more like a circus.

I was glad to read you had a nice day out in Southwold. Raymond and I went there a couple of times when we lived in Essex. We used to go to Frinton very often and nearly moved there. We like the seafront and we also liked Walton on the Naze. I have no idea what they are like now. We also liked Cromer.

We are getting ready here for the onslaught of visitors and trying to work our way through lists of things to do in an attempt to get some relaxing moments.

We are alright but Raymond does have some problems with the leg that was not part of the triple bypass and we are trying to work out what it is. He gets some pain in the calf after walking a while and mainly when the pavement gets a bit steep. It seems there is always something about which to worry. You know we are not keen visitors to doctors! He does get very tired.

As for me, I am full of energy and try to accomplish something each day.

It is good to have Mary back and I hope she finds the time to post more regularly.

Take care and enjoy the sun.

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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May 28, 2021 12:50PM maryna8 wrote:

Hi, Sylvia

Well, my oncologist appointment didn't happen, the office called me about 2 hours before I was going to be at appt and said they had to reschedule the appt and I should return their call. So I was feeling miffed because I had no warning about this, then I had another call from the office while I was outside, when I returned the second call, the message said I had missed my appointment. My calendar said 12:15, theirs said 9:45. So I am put off till June 10th. I did get the MRI report results online and it looks all normal, yay.

I am glad that you and Raymond pay such attention to your prescription meds and don't take more than needed, that is what I would expect from you two! I also know people who take a very large amount of prescription drugs. I must confess I overdosed myself with an antihistamine about a month ago. My allergies were tested again this year to see if I am making progress, before the test I am taken off any allergy medication for 2 weeks. Which in my case includes an over-the-counter antihistamine. Since it was just getting into the spring allergen season with pollen flying everywhere, I was truly miserable. The day I got tested they gave me an antihistamine as soon as I finished the test, and the nurse said I could take one in the morning and one at night without harm. Within a few days, I began to feel dreadfully fatigued, and this fatigue was deep enough that I didn't even realize for a couple of weeks that I was still taking the 2 antihistamines daily. When I stopped doing so, it took a few days to get over it and then I went back to myself, for whatever that's worth. So even over-the-counter meds can get to you, and in my case it didn't take much!

I would really not like to be put on high doses of steroids, the doses we had to take during chemo were very unpleasant, as far as I was concerned. However, I don't know what would have happened if we hadn't taken them. The steroid shots I get in my knees every 6 months or so have a localized effect, I feel it in my body generally for only a couple of days. Was it methotrexate they give patients with Covid, I think so. I watched a news show on TV last night, a gentleman said that it is now thought that having the Covid virus sets you up for decades of immunity to the illness, sounds to me like there is no need for vaccine if one has had Covid. The news now coming out of the Wuhan Lab is quite worrisome, although I suspected all along that something was being cooked up there, not hard to also think that something could escape. The news has come out about some of the scientists getting very ill, and of course they were out in public, and in hospital, and spread the thing. It's too bad this Lab is not putting their time and money into something useful. And also very interesting that news is also coming out about where some of the money came from to aid in these experiments.

As far as my saying I did not have genetic work done when diagnosed, I may have misspoke. I did have the BRACA test done, which was Negative. But I meant work with my tumor, to see its' genetic make-up, to choose drugs and so forth. I don't think that was done back then though, things have come a long way and are moving fast in the anti-cancer world. This morning I read in the newspaper that "in 5 years there may be a simple blood test costing less than $500 that can detect 70% of all cancers in the earliest stages. When patients with breast, prostate, and thyroid cancer spot the disease early, their 5-year survival rate is 99%." There is also a gene-editing technology called CRISPR, which deploys a molecular defense system borrowed from bacteria which use this system to kill invading viral cells by unzippering their DNA to rip it apart. These therapies are now in phase 2 trials in the US for some of the blood cancers. There is also much work being done with stem cells and immunotherapies, which we have seen being used widely already, such as Keytruda. Progress is being made, although we don't see it every day it is there. I always feel better about this research news when I remember the young research scientist I met in Alaska, who was from Australia and working in London and his area of research was TNBC. He was so pleasant and intelligent, it gave me a good feeling about the whole thing.

I do agree with you about Biden and Trump, and the difference is stark. Whatever one thought of Trump, he spoke his mind and often paid no attention to the "script" unless he wanted to do so. Biden is glued to the teleprompter apparently, there have been several humorous articles written about his relationship with the teleprompter. In the mainstream media however, Biden does no wrong and is seen as kind and fatherly and a strong leader. I don't believe it, I think he is more of a puppet. That is my opinion.

I was reading an article a couple of days about the troubles in Colombia, and thinking of Marias. After reading a bit though, I had a thought that it really sounded a lot like news here in the USA has been. Riots in the streets, uprisings, shootings galore, that was a sobering thought. In the last year things have escalated to an alarming pace. I think in most cases one is better off not to be in the large cities. The mayors of most large cities are soft on crime, and encourage more of it. One of the articles I read was from Cali, in Colombia, which is the city where Marias did live when she was posting. Armed Marxists leading riots were mentioned more than once, I suspect they are behind many uprisings here too, and all over the globe, lessons from the past are seeming to be ignored again.

Enough for now, I will be back again soon, take care.

Love, 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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May 29, 2021 07:00AM Rosiecat wrote:

Hello Sylvia,

Bright sunny day here. We usually stay at home during bank holidays as the roads are full of people rushing to the coast or adventure parks. Exmouth will no doubt be crowded, I'm going to take a look at the beach webcam later.

Raymond's calf pain and ongoing tiredness is worrying for you both. I do think it should be checked out properly and a doppler ultrasound done to look at blood flow in his legs. His tiredness needs checking as it's been over fifteen months since his heart surgery. You're right, there's always something to worry about. It's particularly annoying for you and Raymond as you you've had such healthy lifestyles.

Michael is having his echocardiogram this morning. Immediately afterwards his heart monitor will be fitted. An interesting weekend.

You asked what I think the lump on my back is. I'm not sure, but I'm hoping that the breast surgeon will arrange an ultrasound. I don't think it's safe to say 'watch and wait' or it looks like a small cyst. If it was on the mastectomy site or the other breast would my GP have said the same? I certainly hope not!

I didn't see much of Dominic Cummings' interrogation. I read some of it and what he says fits with what I already knew or guessed. I dislike the man but believe him this time. Of course he's now labelled a revengeful liar by the the media and Tories alike. Why didn't Starmer go on the attack during Prime Minister's Questions? Where's his passion? I fear we have virtually become a one party state - unless something drastic happens in the near future. It's all very depressing.

I'm concerned that women who present with breast lumps are no longer being referred to clinics as a matter of course. A 51 year old friend in the village recently found one small hard lump under her right arm and another lump in nearby breast tissue. She emailed her GP who saw her two hours later - quite impressive. However, after examining the lumps, the GP said they were nothing to worry about. She may well be right, but pre Covid this would have been double checked at the hospital breast clinic. Nearly three years ago my GP was convinced that my cancer was a cyst but referred me to the clinic as it was impossible to be certain. My breast surgeon also thought it was a cyst but still ordered a mammogram followed by an ultrasound. Behind the large cyst was a tumour. Women need to insist on being referred even if it means making a nuisance of themselves.

That's about all for today. Have a peaceful weekend.

Love,

Gill xxx


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 29, 2021 07:28AM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your latest post.

It looks as though we all have hassle with our health services.

We also know lots of people around us who are taking all kinds of prescription medication and they do not seem to question this. We do not believe in taking medication for years as all pills have side effects. Orthodox medicine seems to be based on blocking natural processes in the body. This must have side effects. A pill for an ill. Raymond is taking only soluble low dose aspirin on prescription and we have decided just to buy it ourselves, so we shall not put in a prescription and wait to see what happens.

I was interested in what you had to say about allergies. Raymond suffers from them as well and they have been bad lately. Devon is not a good place to be! As for steroids, I think they need to be avoided. I remember putting on my consent form for treatment that I did not want any steroids. I remember being given steroids to take for three days after chemotherapy treatments but I did not take them. Probably the only steroids I had were in the intravenous treatment. It was methotrexate that was and probably still is that is being given to Covid patients and it seems to help, but I have read recently that indiscriminate use of steroids in Covid patients can lead to what is being called black fungus. Steroids also make people pack on weight.

As for immunity for decades after Covid, I do not believe that. As far as I know the length of immunity has not been established.

The news about Wuhan is old news that has just been stirred up again. I think that the coronavirus has been spread to humans through animals and in this particular case from bats or fleas on the bats to other animals and then to humans. It is well known that this has been going on for a long time.

I do not know what to think about breast cancer and cancer in general. We need to find the causes rather than the cures, because to get to a cure is nearly always through pills etc. which damage the body for life. Prevention is better thn a cure!

As for politics, and politicians, I have no confidence in any of them. They are all self serving and a lot of them have too much money and have no idea how ordinary people live.

I do follow the news about Colombia and it is a dreadful state of affairs. I do miss Marias on the thread and I also miss Hanieh. They were both very strong women with minds of their own. Governments are wary of strong-minded people whom they cannot brainwash.

That is about all for today. It is a bank holiday weekend here and the weather is supposed to be good, so I am expecting a mad rush to Exmouth beach and perhaps the centre of town. It seems pathetic that people set such a high priority on having to get to pubs and restaurants.

That is all for now.

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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