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 Jun 20, 2022 02:02PM by sylviaexmouthuk

Posted on: Sep 12, 2010 08:43AM - edited Jun 20, 2022 02:02PM by sylviaexmouthuk

sylviaexmouthuk wrote:

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

I was diagnosed with a very large tumour, triple negative, in 2005. I had pre-adjuvant chemotherapy, epirubicin, cyclophosphamide, and then docetaxel, followed by right breast mastectomy with removal of seven lymph nodes, only one affected, the sentinel node. I had three weeks of radiotherapy plus boosters. I had very few side effects from all of this treatment, except fatigue. I am still in the clear after 17 years and 00 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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May 21, 2022 06:25AM 22lumos wrote:

Hi Everyone!

Once again, I thank you for your posts. They are so helpful.

Mary, our experiences seem to be similar. My WBC count was 0.08 in the hospital, before a got a booster. They also gave me a lot of antibiotics which gave me diarrhea. By the time I left the hospital on Friday, I felt much better.

After my infusion on Wednesday, I was very, very tired. Thursday and Friday weren't much different. I'm a bit nauseous, but try to eat what I can. My husband is watching me like a hawk. We'll keep a very close watch on everything--temperature, blood pressure, and if any mouth sores appear. I did get another WBC booster on Thursday.

I have only 2 infusions left for this second round. Then I will be done with chemo. I keep trying to look ahead at the finish line.

I was supposed to meet with the breast surgeon, but was in the hospital. I'll try again over the next few weeks.

Thank you again for your posts. They are so helpful!

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
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May 21, 2022 10:43AM rosiecat wrote:

Hi Sue,

You seem to be a bit brighter than after your last infusion. It helps so much having an understanding husband to help you through the challenges of chemotherapy, I don't think I could have coped without mine. Mary's husband was seriously ill during her treatment and she needed to nurse him at the same time as trying to get through her chemotherapy. The thing about cancer is that it affects the whole family. My children were in their 30s when I was diagnosed, living in different parts of the UK and holding down responsible jobs. I still remember how devastating is was for them. My daughter, a doctor, knew how serious my type of cancer was and broke down several times. I felt guilty at the time, I wanted to protect them, in fact I considered not telling them at first. I expect you are going through this sort of inner conflict currently. Once the chemotherapy and surgery is completed, it's surprising how quickly our children get back to normal. My husband still worries at times and of course I still have dark days when I panic about a possible recurrence. But eventually the bad times fade into the past and life just goes on and it will be the same for you too.

You're very close to the end of the ordeal now, so keep looking forward.

Love,

Gill xxx

Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 23, 2022 07:22AM 22lumos wrote:

Thanks Gill,

I did consider keeping my diagnosis from my children. But they both live close by and one of my sons works in the same school district where I work. I also felt like I didn't want them to hear the news from someone other than me--they both leave fairly close. I don't see them often, but we talk on the phone. They seem to be going about their lives, which makes me feel better.

I feel a bit different after this second infusion. It's probably because I had the WBC booster. But I still feel a bit nervous because I felt okay until the 9th day after the first infusion (without the booster). My husband is a bit nervous as well. I don't want to be waiting for the shoe to drop, but I'm keeping a close watch.

I'm really trying to keep looking forward. I need to meet with the surgeon to see what plan she'll suggest. And I need to get through the 2 final infusions. They're 3 weeks apart, so the wait seems excruciating! I'll be done by the end of June! That doesn't seem so bad.

I'll be happy to put this in the past!

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
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May 23, 2022 11:33AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post. I cannot believe that Boris Johnson appears to be getting off the hook. We start another week and I am wondering whether the Sue Gray report will finally be opened up to the public. It looks as though she was paid a visit by you know who and that is definitely not right. How much has been altered? We need to see the photographs. It would not surprise me, either, that Keir Starmer gets a fine and has to resign. The establishment has always tried to demonise the Labour Party.

There is so much corruption with those running the show that everything seems hopeless. We just go from one thing to the next!

I am sure that Sue would find the Chris Woollams latest newsletter very interesting. Seventeen years ago nearly when I was first diagnosed, the magazine, icon, from Cancer Active, became my guiding light. Everything now seems to be online, but I did like the magazine.

I was glad to see that you had answered Sue. It will not be long before she finishes her chemotherapy treatment and the rest of the journey will not seem so difficult.

Raymond and I have been informed that we can have the second booster, but we have decided we are not going to have it. A friend of mine told me that she and her husband had had it but that it does not get marked on a card that you have had it. Our first three were definitely put on a card and we keep them as proof, so what is going on?

What do you think of the new viral scare of monkey pox? There was an information programme on the BBC at 12:30 today and the rash looked horrible. Apparently this virus comes from West Africa, Nigeria. It is already spreading here in the UK.

That is about all for today. We are getting April showers and somehow I feel rather weary.

I hope you and Michael are well and that you will have a good week.

Lots of 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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May 23, 2022 11:39AM sylviaexmouthuk wrote:

Hello Sue,

I just wanted to say that your chemotherapy journey is rapidly coming to an end. You will feel very relieved when that happens and find the rest of the cancer journey easier to deal with. I had plenty of check ups at the end of chemotherapy to see how everything was. I was given about three weeks to recover before having surgery.

It would be useful for others viewing if you put in the details of your chemotherapy drugs after where you have put chemotherapy 2/2/2022.

Sending you love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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May 24, 2022 06:11AM rosiecat wrote:

Hi Sue,

Yes, I know what you mean about feeling okay after the infusion, but waiting for something to happen all the same. I used to develop a high temperature and start shivering a week after an infusion. Like clockwork. Always happened to me very late at night too and I'd be tempted to leave it until the next morning before calling emergency oncology. Thankfully, I never did leave it. I remember those midnight dashes to hospital very clearly, I live in the countryside and during December many of the hedgerows and trees were festooned with fairy lights. Everything looked so pretty and unreal. I dreaded reaching the hospital, there was rarely a free bed in isolation and I was often given a trolley in the treatment room for a few hours. I shouldn't really complain as bloods and antibiotics were arranged fairly quickly. Once an isolation room was found, my temperature would be too high for blankets to cover me and the windows were opened to let in the cold air. Thank heavens for antibiotics. The two things I dreaded most was the isolation and continually being told I had to eat and drink when it was the last thing I felt like doing.

The main thing is that I got through it and so will you. There's no doubt at all that these last infusions are the toughest. But just think, in three weeks time you'll be doing your last but one chemo and three weeks later it will all be over. I remember how excited I was to have my final chemo. Surgery is so easy after the chemotherapy roller coaster. Once my main treatment was completed I was given 6 bone strengthening infusions of zoledronic acid, one treatment every 6 months for 3 years. You'll probably be offered the same. Each infusion lasts for just over 30 minutes, so very quick. I had a few bone pains and a headache after the first treatment, but nothing after that. Zoledronic acid doesn't cause nausea or mouth ulcers!

You'll probably feel much happier when you've met your surgeon and have planned the way forward together. Not long to go!

Love,

Gill xxx


Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 24, 2022 06:58AM rosiecat wrote:

Hello Sylvia,

I think most of the covid boosters are going to be offered in the Autumn. Only those over 75 have been notified in this area. We have no idea about infection rates in the UK, so I understand why both you and Raymond have declined the booster. We are, as always, in the dark as to the facts. I have no idea why vaccination cards are not being marked with the latest booster dose, after all there may be a time when evidence is needed. Those vaccinating do add the booster to our electronic medical records, but we should have some actual physical evidence to keep for ourselves surely. Nothing is ever thought through properly is it?

So, the Prime Minister and his chums offered Sue Gray the advice that her report should be scrapped now that the Downing Street parties were all out in the open! We heard about this yesterday and within hours (probably minutes), yet another incriminating photo is leaked. The BBC is not reporting much that might affect our liar in chief, but ITV and Sky news certainly is. Clearly Johnson and co thought they could isolate and bully Sue Gray into submission. They were wrong. Have you noticed the Tory front benches now saying that 'leaving dos' were to be expected during lockdown and were within the rules? They were parties, in a workplace were alcohol was forbidden under civil service rules and under previous Prime Ministers. Rules? Some students in Norwich were given £10,000 fines for breaking the 'rules' which we understood were emergency covid laws. The Met Police have a great many questions to answer and another Police Force outside the Home Counties should be asking them. The Good Law Project is asking for a full investigation.

Monkey pox does seem to be spreading more quickly than expected, but I don't think we should be worrying just yet. I'm going to do some searching to see what I can find out. The rash is horrible and I wonder if it leaves scars like chickenpox, or has any long term impact on health?

The weather has broken here, we needed the rain, but not the slugs that it brought out in force. I'm just amazed by how many bedding plants they can eat their way through in a single night.

Enjoy your week.

Love,

Gill xxx


Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 28, 2022 06:21AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post.

As fo the vaccines, those in charge do not seem to be pushing them as much as they did. I think this is because there are lots of problems about side effects slowly being revealed. GBNews seems to be the news channel t is concentrating on this the most, especially at 8 pm and 9 pm. There have been quite a few interviews with family members who have had loved ones die and quite soon after the vaccination, and these are not elderly people and were quite fit and healthy. It seems to be a problem with all of the vaccines.

Some people I know here have had the second booster (4th vaccine) and in general have been given Moderna. Even after the 4th vaccine, there is mention of another one coming in October, along with the flu vaccine!

It would not surprise me that a vaccination programme is set up for the monkey pox. This seems to be spreading and getting more and more of a mention. Apparently it not only comes from monkeys, but other animals as well. I did hear someone among the corporate big-wigs at Davos saying how lucrative and profitable the coronavirus has been for business.

As for medical records, vaccination records or not, who knows what going on? Raymond and I have had mixed up records at the hospital and the surgery.

It is shameful what is going on in our government. The Prime Minister should be forced to resign but he has no shame. A rule was mentioned yesterday that MPs who have lied to Parliament will not have to resign. This is called democracy?! The fact that the Tory MPs have not come out in force to get rid of the Prime Minister just shows that their moral code leaves a lot to be desired. They must all all be laughing at the public, not to mention the opposition. It would not surprise me that the police now fine Keir Starmer and he will have to resign because he promised to do so. There will be one law for him and one law for Boris Johnson.

The weather is very pleasant here today, so it means Exmouth will be full.

I do hope that Sue will be alright as she near the end of her chemotherapy journey. I read your post to her so it refreshed my mind on what a difficult time you had.

We are very lucky not to be going through treatment during these difficult times. It will be seventeen years since my diagnosis on June 20th this year. It does seem very long ago. There is definitely a lot more information now but a real problem of getting a diagnosis with the least delay. It must be very frightening for patients.

I do hope that you and Michael will have a pleasant week with plenty of relaxation.

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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May 29, 2022 11:02AM 22lumos wrote:

Thank you Gill and Sylvia,

I will try again to get all the info into my profile.

I had a rough week last week, but I'm feeling a bit better and trying to build my stamina. This round of chemo is SO different from the first. I've had to readjust and rethink everything.

My oncologist had asked me after infusion 2 to take an iron supplement, which I did. But I got so constipated that I was in a lot of pain and discomfort, therefore not wanting to get out of bed or eat. We finally called him on Tuesday and said I was stopping the iron and working on solving the constipation.

I'll be meeting with my surgeon this week. I was scheduled to meet with her, but was in the hospital, so I had to cancel. They seem to get me in quickly these days.

My experience in the hospital seems different from what you all experience in the UK. When I initially arrived in the ER, I was not in isolation. But once they discovered my status, I got the next isolation room quickly. For the week I was in the hospital, I had an isolated room. Eating, though a concern, seemed like they'd let me have whatever I was willing to eat. They did check, but didn't judge what I was willing to eat. I also had a visit from a nutritionist who supplemented some of my meals, though if I chose not to eat what she supplied, no one chided me.

I feel lucky to have the support and opportunities that I have. I'm looking forward to chemo being finished and surgery being behind me. My body feels so weak and stamina is gone. I'm hopeful to be able to build them up again and get back to work.

Thank you, as always! Your words bolster my strength and positivity.

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
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May 31, 2022 06:04AM rosiecat wrote:

Hi Sue,

I'm not at all surprised that you've given up taking iron supplements. I suffered from anemia from my early twenties until the menopause at fifty. Iron tablets made me both constipated and nauseated. In the end, I coped by taking only one tablet every three days for two weeks every month. Not a perfect solution, but it was doable. As chemotherapy often, but not invariably, causes iron deficiency, some patients are advised to take supplements, though I don't know anyone given this advice here. As you're now so close to the end of treatment and iron supplements are causing you serious problems on top of the usual chemotherapy side effects, iron deficiency may not be of huge importance. Your medical team will soon let you know if there's a major issue. Ultimately, your body, your choice.

You're so close to the end of the most difficult part of treatment. I felt like a complete physical wreck by the stage you're at now and used a wheelchair to get from the car to the chemo unit, as my legs would no longer hold me up. Don't worry about getting your stamina back at this point. It will begin to improve within a few weeks of your final infusion and so will your appetite. I can't believe that I went through all that, it seems like a bad dream now and it'll be just the same for you. We're stronger than we think!

Good luck.

Love,

Gill xxx

Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)

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