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 05:43AM - edited Aug 20, 2022 01:54AM by sylviaexmouthuk

Posted on: Sep 12, 2010 05:43AM - edited Aug 20, 2022 01:54AM 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 17 years and 02 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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Sep 15, 2022 10:35AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post of September 12th.

The weekend was not too bad.

I do hope Mary is doing well, but I honestly think that she will not post regularly like she used to. She has a lot going on with her life.

As for what is going on in this country, I do think that the last week has been over emphasised. There are so many serious problems that Parliament should not have shut down like this. Making this coming Monday a Bank Holiday has sent everything into chaos. On the Microsoft news the NHS has been turned upside down with appointments being cancelled. Even funerals have been cancelled for that day. All this money spent on flowers etc. should have been given to food banks to provide for those in need.

Liz Truss should be in parliament. Like you, I cannot believe that Therese Coffey is a good advertisement for Health Minister. The front bench gets worse and worse.

This morning on Radio 4 the new programmes for Thursday morning at 9 am, In Our Time with Melvyn Bragg started and it was all about George Orwell and his novel 1984. It was most interesting and, if you can, listen to the abbreviated version this at 9:30 pm. Like you, I think we are well into 1984 territory.

I am not familiar with Logan's Run. Can you explain it?

That is all for now. I do think it is time to end this thread. There are just the two of us and Sue participating now.

As far as breast cancer is concerned at the moment a thread is needed about the lack of care for breast cancer patients, and indeed all cancer patients, and how they are not being diagnosed in time etc. in the UK but I do not think an American forum is the best place for this. I started the thread September 12th 2010 so it has gone for twelve years.

Thinking of you in these worst of times.

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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Sep 15, 2022 10:54AM sylviaexmouthuk wrote:

Hello Sue,

I was glad to read that everything is going well with your radiotherapy. Before you know it it will all be behind you and you will be able to start to get back to normal.

We are living through difficult and impossible times here and there is no one in government really capable of sorting it all out. The Conservatives believe in low taxation and low services. I believe that if we want decent services we have to have taxes to pay for them. Most people cannot afford to pay for private services like the elites running the country. We have gone backwards since the 1945 Labour Government under Clement Atlee began to rebuild after WW2 and started the welfare state, the NHS etc. under the motto Care from the Cradle to the Grave. They were the Rock of this country and it has all been destroyed.

Raymond and I had the two original coronavirus vaccines and then the first booster. We have decided not to have the fourth booster, nor indeed the fifth one or the flu vaccine. There is only so much poison a person's body can take. Too much money is being made on these vaccines and they have become a control system. We shall continue to use our common sense with social distancing, mask wearing and a healthy diet. I am expecting coronavirus numbers to increase with all the huge crowds that have been gathering over the past week.

Wishing you all the very best during your radiotherapy. You can get through this.

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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Sep 18, 2022 02:52AM rosiecat wrote:

Hi Sue,

Hope you're still feeling okay. Just go with your body, it'll soon let you know when it's time to rest. I think the fatigue sets in towards the end of treatment. Just having to attend the daily hospital appointments must be fairly tiring in itself - especially for those needing to travel long distances.

Absolutely agree about parents sending their children to school when they're ill. It's really unfair on the staff and other children/parents. Some employers understand that parents need to take time off for sick children, others are completely intolerant. Not everyone has a relative living nearby willing to take care of a sick child. Who wants to give granny a bad cold or stomach upset anyway? My daughter's a doctor in general practice and when her daughter caught covid for the third time, she was forced to take her childcare days off out of her holiday leave. I also get angry with retired people who could quite easily stay at home, but prefer to go out and spread their germs about - yes, even covid!

My husband had his Autumn covid booster yesterday, I cancelled my appointment as I have a feverish cold, the nurse doing his vaccination said that immunity ranges from zero to a couple of months. Unsurprisingly, there's a very low take-up of the second booster here and most of the people I know are still undecided. I'll probably have mine, but it hardly seems worth it. I always have my annual flu vaccination and that's coming up. As your immunity will have been weakened by chemotherapy another covid vaccination might be worth considering.

President Biden has flown in for the Queen's funeral, but won't be travelling on the specially commissioned bus taking other heads of state to Westminster Abbey. The King is very keen on minimising damage to the environment and didn't want dignitaries travelling in large gas guzzling limousines. Oh well.....

Wishing you a healthy (not too tiring) week.

Love,

Gill xxx

Surgery 9/17/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Sep 18, 2022 03:54AM rosiecat wrote:

Hello Sylvia,

I always look forward to hearing from Mary, she'll be back for a catch-up soon no doubt. Concerned about Helenlouise though and have just reread her last comment, which was worrying.

Agree that the wall-to-wall coverage of the Queen is now becoming tedious. Closing down Parliament for so long has just been an excuse to avoid scrutiny. Parliament will be closed again just after it re-opens as the political conference season begins. Surely this could have been cancelled for once?

Logan's run was a film made in 1976. It depicts a future society where the world's depleted resources are maintained by killing everyone when they reach 30, two people escape and we follow them through their flight. We have to hope Truss hasn't seen it, though she already seems to be doing her best to kill off the poor, the sick, the disabled and those living on state pensions.

Watching the demise of our health service is extremely depressing. The Government's latest idea is possibly more so. It's come up with the idea of encouraging parents to help fund their childrens' education at struggling state schools. All state schools are struggling due to lack of funding, so all parents are being encouraged to chip in. Thus, children living in poorer areas will lose out once again. Why aren't we rioting in the streets?

No news that I can find about breast cancer. It's lucky we have Sue to keep us up to date. Other threads are quieter than they used to be, though now that the new site design seems to have bedded down perhaps posters will return.

We had quite a lot of rain on Friday and the weather is about normal for mid September - perhaps a bit cooler. Both cats are indoors all day, so they must be feeling the change from Summer to Autumn. At least the holidaymakers will have left Exmouth and all will be quiet again.

Take care of each other.

Love,

Gill xxx

Surgery 9/17/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Sep 23, 2022 02:38AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for yr latest post of September 18th.

Like you I do hope that HelenLouise is alright and that she is not having problems. She has been through so much.

I do hope that Mary will be in touch and that she is not having health problems.

I think that we have to face up to the fact that this thread is no longer active and that the other long term thread, Calling all TNs is not as active as it used to be. As I have said before on the Triple negative forum, we have a mixture of threads being created and none of them grow like the two older ones used to.

I think the whole thing about the Queen's funeral was overdone and that we are in dire need now of getting back to the reality of the dire state of this country. Nothing is working and our politicians could not care less. We have too many antiquated rituals and we need to modernise.

The film Logan's Run sounds like a very interesting film. We may be going through a version of it now with the state wanting to be rid of pensioners. I seem to remember reading a book by P D James in which old people were taken out on boat trips, but did not return! I also remember something entitled Soylent Green in which old people were killed off and recycled into biscuits!

We could be heading into a situation where both health and education is based on ability to pay.

I also wonder why we are not rioting in the streets!

There is not much else to say. When we can find the time, Raymond and I are going to re-read 1984 and Animal Farm. We seem to be living it.

Thinking of you and 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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Sep 23, 2022 02:44AM sylviaexmouthuk wrote:

Hello Sue,

I am just popping in to say that I hope all is going well with your radiotherapy and that you are coping well.

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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Sep 23, 2022 03:47AM 22lumos wrote:

Hi Sylvia and Gill,

The radiation is going well. I just finished the 8th treatment on Thursday and will be halfway done after Monday's treatment. I am experiencing some fatigue and applying lotion, but I'm doing fine. I know this is cumulative, but I'm keeping my walking going and getting on my exercise bike a few days a week. I'm hoping that will help.

They're doing another scan next week and changing my position for therapy. For the last 5 treatments, I'll be lying on my back instead of on my stomach. I will ask the doctor about it on Monday--I only see him once per week.

Hope all is well and you are all healthy!

Love, Sue


Round 1: Keytruda, Taxol, Carboplatin Round 2: (every 3 weeks) Keytruda, Cytoxan, Doxorubicin Chemotherapy 2/2/2022 Other Chemotherapy 2/2/2022 Other Dx IDC, Right, 3cm, Grade 3, ER-/PR-, HER2- Surgery Lumpectomy (Right)
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Sep 24, 2022 04:08AM rosiecat wrote:

Hi Sue,

Pleased that you're doing so well and managing to cope with some exercise too. You probably feel relieved that you won't have to lie on your front for the final treatments.

You were obviously very fit before cancer struck and that's probably helped.

Love,

Gill xxx

Surgery 9/17/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Sep 24, 2022 04:45AM rosiecat wrote:

Hello Sylvia,

Not sure that I'd want to be recycled as a biscuit! Best keep that idea well away from madam Truss.

Nothing for the NHS in yesterday's mini budget and covid rates are rising quickly again. Will it never end? It seems likely that many NHS workers will have to leave in order to find more lucrative work. Therese Coffey thinks that volunteers and charities will plug the funding gap. When I was in the Norfolk and Norwich hospital the wards were very cold at night and the bed linen thin and inadequate. Michael had to bring in a blanket from home. How will it cope with the fuel crisis? No solutions, just borrow more money and let the public pay it back in a few months time. No windfall tax on billionaire fuel company bosses. Cap removed from bankers' bonuses and nothing for health or social care. I'm terrified in case either Michael or me need medical treatment. You probably feel the same.

I don't think the situation on the thread will improve. I've been looking back to the early days, when it was very active. Other breast cancer websites seem to be suffering too - maybe people have become disenchanted with social media in general. I hope this doesn't mean that breast cancer patients just accept the treatment they're offered without question, especially in England.

That's about all for now. Wishing you and Raymond an enjoyable weekend.

Love,

Gill xxx

Surgery 9/17/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Sep 25, 2022 05:59PM - edited Sep 26, 2022 05:21AM by pkville

Hello All-

I have reached 5 years out from my diagnosis of TNBC. I started my treatments in the first week of September after going on a trip to celebrate my middle daughters upcoming wedding. Oh how dreaded returning home and starting my treatment. But I walked into the cancer center that Thursday after returning from the trip. Whenever anyone asked me how I was feeling during my chemo treatments, I would tell them you know not too bad. Mainly because I knew that they too may face that diagnosis one day and didn't want them to have the fear that I had. Looking back there were some very dark moments that could of been avoided had a nurse or oncologist had been more emphathetic in their comments. But I'm so very grateful for those who supported me and cared for me and cheered me up. I really have not made any statements about being 5 years out - I know that it's crazy thinking but I don't want to jinx myself! But I felt the need to let others know that my oncologist was very grim about my diagnosis and getting to the 5 year mark. She is a brilliant doctor but doesn't have relationship skills and so be it I received the best she had to give and grateful for that. Although I seldom post, this particular thread has been an anchor for me and am so very grateful for the women that continue to post here. People talk of a new normal in survivorship, which I'm not so sure of - survivorship has its own set of challenges as far as navigating those situations that can trigger emotions and anxieties. Well I just wanted to share the news that I have reached 5 years to women who would understand how that feels.

I hope everyone is well- Paula

Chemotherapy 9/7/2017 AC Dx IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Radiation Therapy Breast, Lymph nodes Surgery Lumpectomy (Left); Lymph node removal (Left): Sentinel; Lymph node removal (Right): Sentinel

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