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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 Feb 21, 2021 10:04AM 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 08 months. I still live with fear of recurrence or spread, but I live a normal active life. If I can do it, so can you!

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

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jan 22, 2021 02:38PM Hana84 wrote:

Hi everyone, my name is Hana and I am 36 years old. I was diagnosed with TNBC on 28th of December 2020. At first I was feeling very optimistic - stage I, both PET scan and MRI showed no lymph node was affected. I was scheduled for the clipping of the tumor (16mm) and additional mammogram and sonogram on Tuesday this week. The doctor found an enlarged lymph node and took a biopsy. I received a call today that in contrast to my initial diagnosis, I have an involved lymph node (in the axilla). So the stage is not cT1N0M0 but cT1N1M0 (the PET-CT apparently didn´t trace this axillary lymph node) and now I feel so scared again.

Dx 12/28/2020, Left, 1cm, Grade 3, ER-/PR-, HER2- Chemotherapy 1/20/2021 Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Jan 22, 2021 03:33PM Moderators wrote:

Hi Hana, and welcome to Breastcancer.org.

We're so very sorry to hear of your diagnosis, but we're really glad you've found us. You're sure to find our Community an incredible source of advice, information, encouragement, and support -- we're all here for you!

Others from this thread will surely be by soon to offer help and welcome you. In the meantime, we thought you may find it helpful to do some research on our main Breastcancer.org site's page on Triple-Negative Breast Cancer, where you can learn about treatment options, hear podcasts that may be helpful, and get overall information about what you're dealing with. Knowledge is power!

We hope this helps and we look forward to seeing you around the boards. Please let us know if we can do anything at all to help!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jan 22, 2021 04:27PM Rosiecat wrote:

Hi Hana84,

Welcome to the thread. I quite understand why you're feeling so frightened. You only went through the awful shock of diagnosis at the end of December and were just about coming to terms with it when you were hit by more unwelcome news. I don't know if you've looked at other posts here, if you have you might have noticed that both Sylvia and Mary also had lymph node involvement. Mary had two nodes affected and is about to celebrate seven years of being cancer free. Sylvia had one node and is more than fifteen years out. As for staging, both my breast surgeon and my oncologist told me that they didn't set much store by it. I'm actually stage 2a. You are still early stage and have began chemotherapy very soon after diagnosis. I'm not medically trained and can't give advice, but from all the information you've given here, it appears that you still have every reason to be optimistic. You would benefit from discussing your concerns with your doctor, he or she will be very used to patients being frightened and will want to help.

Keep positive and keep looking forward. I hope you'll come back and let us know what's happening.

Good luck!

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 23, 2021 05:22AM sylviaexmouthuk wrote:

Hello Hana84,

Thank you for your post. We shall do everything that we can to support you through all of this and just keep telling yourself that you will get through this journey.

You have a very small tumour and just one lymph node involvement, so remain optimistic for a very good outcome. Over 15 years ago I was diagnosed with a 6+ cms tumour which seemed to appear from nowhere. I also had one lymph node involved under the arm (the sentinel node). The first person I saw, the breast cancer surgeon, told me it was a poor prognosis and this was before I had had any kind of tests. I was told that my tumour receptors were not hormonal. Triple negative was not mentioned at that time. I was not told the stage, just that it was grade 3. Most triple negatives are grade 3 but not all.

Because my tumour was large I was given six months of chemotherapy to shrink the tumour as much as possible. The chemotherapy did shrink it but it did not disappear. The idea was to shrink it as much as possible to make surgery easier.

I had three months of epirubicin (Ellence) with cyclophosphomide (Cytoxan) known as EC, and then three months of docetaxel (Taxotere). I had these infusions every three weeks. Nowadays the infusions are often done every week and patients say they find this much easier. The oncologist used to measure the tumour on a regular basis.

Please do not feel afraid because of one lymph node involvement.

I see by your details that you are having the same chemotherapy treatment as I had, with the addition of carboplatin. The carboplatin is very popular now but it was not around when I was going through treatment.

Try to relax and go through your chemotherapy treatment and we shall help you all we can to get through it.

Are you having weekly infusions or three weekly?

Remember to drink plenty of water during this treatment and to eat as healthily as you can, as well as getting some fresh air and exercise.

I was told to avoid crowded places and public transport. As far as food was concerned I was told to avoid raw food and seafood. You will probably feel more tired than usual so get plenty of rest as you need it.

Let us know how you get on.

I started this thread back in September 2010, so there are many pages to it. You may like to read some of the previous postings to get a variety of experiences, as well as plenty of information.

With 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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Jan 23, 2021 10:58AM maryna8 wrote:

hi Hana

Sorry you have need to be here, but glad you found us. It does sound as though you are getting the usual treatment, with the exception of carboplatin. I don't think that was around when I had chemo.

I also found that after initial diagnosis, further information would come in. I did not find I had lymph node involvement until surgery for breast removal. And unlike Sylvia and you, I had surgery first, then chemo.

Do not be too distressed by hearing your diagnosis, a consolation of having a estrogen-negative tumor trather than a positive one is that you will not be offered estrogen-blocking drugs later. These can cause other kinds of problems.

Please come back and tell us how you are doing, you are not alone!

Mary


Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 23, 2021 01:31PM Hana84 wrote:

Dear Gill, Silvia and Mary,

thank you all for your kind words of encouragement! I really needed to hear that. I had my first round of chemo on Wednesday this week. My plan is to have 4 rounds of Epirubicin + Cyclophosphamide every 2 weeks and then 12 rounds of Taxol + Carboplatin every week. Then the surgery should follow.

I was told by my oncologist that I would need axillary clearance unless there is a good tumor response with chemotherapy (which they do expect as the sTILs are ´high´). According to him in these cases (with a complete remission of the tumor on breast imaging following the chemo) they can limit axillary surgery to removing only the tumor but also the involved lymph node and 2 sentinel lymph nodes. If it turns out there are no remaining cancer cells in this lymph node, they can conserve the other lymph nodes which makes postoperative revalidation easier.

I know it is still early for any decision, but I am already thinking about mastectomy. I don´t know if it could have been a warning sign but during my periods it was only this breast that was painfull and very sensitive. I am also waiting for the BRCA gene test results which of course will play a big part of any future decision that will have to be made.

Dx 12/28/2020, Left, 1cm, Grade 3, ER-/PR-, HER2- Chemotherapy 1/20/2021 Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Jan 24, 2021 05:00AM sylviaexmouthuk wrote:

Hello Gill and Mary,

I was just wondering whether you are still receiving and reading the email from Chris Woollams.

For the first time in a very long time, I was able to have a quiet day yesterday with no phone calls and not making any. I sat down and read the latest Chris Woollams email.

I looked through the various headings:

1. The Sunday show: Off-label drugs.

2. How to improve immunotherapy.

3. A cheap drug to fight GBM.

4. How to better manage diabetes, blood sugar and obesity. This leads to Go to:

British professors reverse diabetes through juicing.

I looked this one up in more detail because my cousin in London has diabetes and does not manage it well.

5. How to reduce your risk of Alzheimer's and dementia. This leads you to go to:

Three studies show gut bacteria involvement in Alzheimer's and dementia, as well as Resveratrol effects in Alzheimer's and dementia.

6. A vitamin to help fight brain cancer.

7. This compound arms your immune system.

8. Is this the reason why chemo cannot cure cancer?

I found this article most interesting and it takes you to Poor Performance of new wonder drugs.

9. Over 80% of Covid-19 patients deficient in vitamin D. This leads you to go to:

Vitamin D? Say out loud 1-2-5.

I do hope you are still reading these articles. They contain some interesting information.

As you know vitamin D is very much in the news these days.

I hope everyone is having a good weekend.

The sun is actually shining here in Exmouth.

Take care, keep safe.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jan 24, 2021 05:34AM peterandliz wrote:

Hello Hana,

Sorry to here you have a reason to be on this thread. My wife was 40 when she was diagnosed. Even though the cancer was in its early stages she decided to have a double mastectomy. After a lot of research Liz felt if she had both removed she would not worry about it coming back as much. Liz also had pain in that breast for a few years before being diagnosed with cancer. She also decided not to have reconstruction as we had read a lot of cases were it had not been a success. However this does depend on your personal situation.

Liz and I was dropped in at the deep end. We were called to the hospital to get her results and to be told she had cancer and it was triple negative. We were asked what treatment we wanted at that appointment as they were going to operate first. At the meeting we decided on a double mastectomy and reconstruction. Not knowing anything about cancer. A few days later we got the operation date through. I spent those few days looking into all the treatments and options. At the time 30% that had reconstruction at the same time had to be operated on again at a later date as the operation went wrong in some way.

In those few days we had time to talk and we decided to not have the reconstruction. We phoned the hospital and changed this. Liz received a new operation date 3 weeks earlier as it was a quicker and easier operation. Liz does not regret for one minute having both breasts removed but it all depends on your own situation and what you want going ahead in the future. We were always told she could have reconstruction if she wanted at a later date as well.

This was nearly 10 years ago now and would not do anything different if she had all the choices over again. I would suggest read all you can there is a lot of info out there. I read this thread from the very first page as I wanted to see what happened to people with cancer over a few years, what they went through etc. Liz and I are also on some Facebook pages were people are going through the same thing at the same time. This way you can talk to people and go though this with them together.

Regards

Peter

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/5/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/19/2011 CEF Radiation Therapy 3/20/2012 Breast
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Jan 24, 2021 08:02AM sylviaexmouthuk wrote:

Hello PeterandLiz,

It was nice to see you back posting on the thread and giving your support to Hana. It is good to have support and the telling of experiences from someone who has gone through it all.

Please congratulate Liz on nearly ten years since diagnosis. This will give huge comfort, encouragement and motivation to everyone viewing or posting.

I do hope all is well with you and family.

With sincere 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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Jan 25, 2021 08:22AM Rosiecat wrote:

Hello Sylvia,

The thread has become quite active once more. The experience of Mary, Peter and Liz and yourself will have helped Hana84 to get back to feeling more positive again.

I have just read an article concerning a woman who was diagnosed with blood cancer in 2017 at Kent and Canterbury Hospital. After going through chemotherapy she was told by her doctors that it wasn't working so they upped the dose. Seeking a second opinion at Guy's Hospital, she was informed that she didn't have cancer at all, but a completely different condition. The doctor at Guys asked if she'd had bone marrow tests or scans of her spleen - she'd had neither. She's lost her job as a carer, her bones became painful, her hair thinned, she lost a lot of weight and of course the list goes on. As you'll recall, I sought a second opinion from Guy's. Although we're dealing with breast cancer here, the message is the same. If anyone has any doubts about their diagnosis, their treatment or the competence of their medical team, seek a second opinion from a doctor at a different hospital who has a proven track record of treating breast cancer.

My cousin who was diagnosed with breast cancer before Christmas finally received her pathology report, over a month after her lumpectomy. She requires no further treatment, just a mammogram and an appointment with her breast surgeon every year for the next five years. Good news, but it's really far too long to wait for results.

I haven't read Chris Woollams' newsletter as I just haven't had the time. I also find that he has a tendency to repeat himself. However, the article on chemotherapy would be worth a look. I still watch Covid bulletins from Dr John Campbell. He explains everything very clearly and uses verified scientific data rather than the dubious 'information' used by Johnson and co. Dr Johnson emphasised the benefits of vitamin D to the immune system months before the Government decided it might be worth a try. The vitamin D supplied free on the NHS is about one tenth of the daily requirement, so almost useless.

Very sunny here. No snow although it was forecast for Norfolk.

Keep safe and well.

love,

Gill xxx



Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 25, 2021 09:06AM Rosiecat wrote:

Dear Hana84,

I'm so glad that you're feeling more optimistic. You'll get through all this, in fact you'll be surprised by how quickly the time passes. Chemotherapy can be utterly exhausting so be kind to yourself, drink plenty of water and eat whenever you feel like it. My healthy eating and regular mealtimes went out of the widow once my taste changed.

Good luck with Wednesday's treatment. I hope your BRCA test results make your decision regarding mastectomy easier. I chose mastectomy as I had the significantly more aggressive triple negative metaplastic breast cancer subtype. You have plenty of time to think about it.

Keep letting us know how you're getting on and feel free to ask us anything you like.

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 25, 2021 10:30AM Rosiecat wrote:

Hi Mary,

Good luck with your cataract operation today. I can remember when people just had to live with cataracts and grow older fearing blindness. Thank heavens that's no longer the case. Michael's annual glaucoma check up has been cancelled again. My daughter's check up in a different part of England went ahead as normal.

I can understand why you have reservations about having the Covid jab. In your shoes I'd want to be in hospital with an EpiPen at the ready just in case. I too had a bad reaction to a tetanus injection, not anaphylaxis, but a strong pain at the side of my neck followed by passing out and vomiting. I wouldn't have another. No other vaccination has caused problems.

According to Government statistics vaccinations are going very well here. However, there are many NHS workers not yet vaccinated when they should have been at the top of the list. Those in group 4 (my group) are being told to expect their jab by mid February. We shall see. Sufficient vaccine supply and staff trained to administer vaccinations are problematic so only one jab is being offered. The second will be given at least three months after the first, not ideal.

I'm reading more and more about the need for vaccination passports. I doubt if a clear Covid test will be enough for travel companies. My son is a very keen traveller and has several holidays and at least one cruise every year. Unfortunately he's been needlephobic for many years and hasn't been able to overcome his fear. I don't know how he's going to be able to get over this hurdle.

It must be a huge relief to be so many years away from your cancer diagnosis, I'm still a long way from that. I looked at some recent research into metaplastic cancer over the weekend. The statistics are still fairly grim and one recent paper had the words 'dismal prognosis' printed in the first few lines. So, back I went to the dark place in my mind reserved specially for cancer. Since then every twinge, ache and pain has been meaningful. Maybe Winter weather and lockdown are getting to me and maybe I ought to stop reading/listening to the news - and research papers.

Let us know how your cataract operation goes.

Take care.

Love,

Gill xxx





Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 27, 2021 05:57AM peterandliz wrote:

Hello Sylvia,

I'm always happy to contribute when it may help. Being young with cancer brings other problems as well. 20% of divorce's are caused by health issues and I'm certain the % is a lot higher in younger people. Liz has many young friends on Facebook that have had cancer and have divorced in the last 10 years so this could be a reason to have reconstruction.

We have had a few changes since Liz's gallbladder operation.

But first the good news. I get my Covid vaccine tomorrow. I hate needles and have trouble injecting myself once a day with insulin and the needle is 4mm long. The TV seems to love to show you how big the vaccine needle is and I'm surprised it don't come out the other side of the arm with a lot of the old people. The phrase "Man up" always come into my head when ever I think about it! I'm sure the needle is at least 4 inches long!

Watching Jeremy Vine this morning while typing this, AstraZeneca have said the UK may hit 30 million vaccination's by the middle of March while the EU are still tied up in red tape. The UK have vaccinated more than any other country apart from Israel. I also see on the news the EU wants to stop us getting our full amount of vaccine that we have bought and paid for. We have vaccinated 7.5 million people more than Germany, France, Italy and Spain put together.

About 8 days after the op Liz suddenly got very painful stabbing pains just below her right shoulder. We were both convinced it was a blood clot. Phoned the hospital number given when Liz left hospital. They said phone your doctor request an appointment either in person or videocall, if you do not have any luck with them ring the hospital back. We filled in the online form and the surgery said they would ring back. They rung an hour later and told Liz it was not a blood clot but she had pulled a muscle so go to bed and rest. Liz insisted she was wrong but it didn't help. We rung the hospital back and they sent an ambulance out straight away. Liz was taken to A&E and a few hours later had been checked over given a blood thinning injection and asked to come back tomorrow for tests. Liz was back the next morning at 9am. Liz was to have a canular inserted so dye could be inserted so it would show up on the scan if she has a blood clot. They struggled to get the canular in because her veins are damaged from the chemo. After 3 attempts they get the canular in. She goes to the next department only to be sent back as it is the wrong type of canular. After 5 more hours, 10 more attempts to get the correct canular in with Liz in tears they finally get the correct canular in. She got a round of applause from some of the nurses and they stated that was the record for most attempts at getting a canular in.

The results were inconclusive so they are not sure if Liz did or did not have a blood clot but has been on blood thinning tablets ever since which does give her pain in her neck veins and ankles. Her blood is extra thick which may be caused by the radiotherapy she had when she had cancer or it may be a type of slow growing blood cancer. She had blood tests yesterday to be sent off to Cambridge to be tested and another appointment with the hospital in April. So its a case of just waiting but neither of us are worried to much about it. It is what it is.

Regards

Peter

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/5/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/19/2011 CEF Radiation Therapy 3/20/2012 Breast
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Jan 27, 2021 06:26AM Rosiecat wrote:

Hello Peter,

Just to let you know that Boots sell Emla cream. Totally numbs the area, excellent for those who don't like needles.

Sorry to hear that Liz is having a difficult time. Hope she has good results from her recent blood test.

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 27, 2021 08:05AM peterandliz wrote:

Thank you Gill.

Its more a case of I don't like them. Like people don't like worms or spiders.

I also hate the dentist but have no trouble having the numbing injections and they are 100 times worse than a vaccination. I really do just need to man up especially when I think what Liz went through.

Only about 2.5% that have the blood test have blood cancer so that's a good start but it means nothing to Liz's situation. Liz is more worried that it could be a bone marrow problem.

One good thing is Liz can eat what she wants since having her gallbladder removed. She has had no problems what so ever so she is happy she can now eat what she likes.

Regards

Peter

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/5/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/19/2011 CEF Radiation Therapy 3/20/2012 Breast
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Jan 27, 2021 10:04AM Rosiecat wrote:

Hello Peter,

I quite understand your fear of injections. My son is needlephobic and nothing can persuade him to have any kind of injection or blood test. I dread going to the dentist too, don't mind the painful injections as much as the drilling. Once had root canal work - never again.

I do hope Liz doesn't have a bone marrow problem. She's really been through quite enough.

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 27, 2021 11:36AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your post of January 25th. I was interested in what you said about that article on the woman misdiagnosed with blood cancer. It is not the first story of that kind that I have read. I think it is always prudent to get a second opinion when there is doubt in your mind.

Your cousin has certainly had to wait too long to get her pathology report after her lumpectomy. I was so glad to read that she requires no further treatment, and just a mammogram and yearly check up for the next five years. If a patient does not have to go through chemotherapy and/or radiotherapy it is a short breast cancer journey with no risks involved and no nasty life time side effects.

I can understand that you have not had the time to read Chris Woollams newsletter. It can be repetitive but you have to remember that he will always have new members signing up to his newsletter. He is also dealing with all sorts of health problems and personal prescriptions. His charity has gone a long way since I discovered his monthly magazine, icon, at the hospital on my first visit after diagnosis. I was so glad that I had discovered it and got to know about the book The Cancer Directory by Rosy Daniels and I read it from cover to cover and made copious notes to ask many questions at the hospital. I have followed Chris Woollams ever-since.

I do agree that the vitamin D supplied "free at the source" on the NHS is insufficient. I cannot understand why this is not being given in much bigger doses to Covid patients, especially those whose skin is not able to absorb it in our cool climes. Other people need it for most of the year here as well, because of lack of sunshine.

It has been another dull day here and I find it very depressing.

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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Jan 27, 2021 12:18PM sylviaexmouthuk wrote:

Hello Peter,

Thank you for your post. You always have something very interesting and helpful to say.

I can fully understand the effect of a cancer diagnosis and a cancer journey with all its after effects on couples, especially young ones. It is a very stressful and traumatic time.

I do hope all will go well with your Covid vaccine tomorrow. I have a younger brother who had a great fear of needles. He told me recently that it came from when he had immunisations as a baby. Somehow his wife has cured him of it but I do not know how.

Raymond and I have not had our vaccinations yet, but we have just received our letters from the NHS inviting us to have one. Apparently we have to go online to do this or phone 119. We have not done this as we intend to go quietly to our local pharmacy, hopefully next week. We do not have a car so do not want to go to one of the mass gatherings.

I was so sorry to read about everything that has been happening to Liz. I do hope that everything will work out for her. How long will they keep on blood thinning tablets? I hear of so many people being on either anti-platelets such as clopidogrel or a new class of anticoagulants that are not as problematic as warfarin and one of them is apixaban (brand name Eliquis) which is its generic name. These ones do not need all the blood tests that warfarin needs.

Please give my best wishes to Liz.

Take care and let us know how Liz gets on and how you get on with your vaccine.

Best wishes.

Sylvia

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jan 28, 2021 07:49AM helenlouise wrote:

Hello all,

I saw my MO today. Heart fraction slightly down on readings from past but still very much within range for the treatment I am on. So full steam ahead with heart test and full CTs in three months.

I am well and need to learn to live with this my new normal. So yay!

I read the posts and know that life in the UK and other places is still very difficult. Australia was rated 8th in the rankings of handling COVID and I am very lucky to be living here. I see how bad life is elsewhere.

Welcome to Hana and good to hear news from Mary, good luck with the cataract operation. Peter, thank you for updates on Liz and what’s happening for you both. Sylvia and Gill always good to read your posts.

Love and best wishes to all x
Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)
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Jan 28, 2021 01:02PM peterandliz wrote:

Hello All,

Just a quick update the vaccination went well, very organized. They were vaccinating in 6 separate rooms so a constant stream of people going through. I was greeted at the door, Sanitised my hands, walked through were they asked for my name to cross me off their list I then joined a queue of 6 people. Within 2 minutes I had been called into the next available room, Name, address and age confirmed. The injection was very quick and painless. Everyone had to stay in the large room for 15 minutes after the injection just to make sure we were ok and did not have any allergic reactions.

Liz is on Rivaroxaban which is a new blood thinning drug but has given her some gout. she is keeping off red meat and cheese which helps.

Regards

Peter

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/5/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/19/2011 CEF Radiation Therapy 3/20/2012 Breast
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Jan 29, 2021 07:45AM Rosiecat wrote:

Hello Helenlouise,

Very pleased that your heart function is stable enough for you to continue with treatments. The three monthly checks must be reassuring. As for the new normal, you must be very used to adapting to change after the long list of treatments you've had to endure.You probably hold the website record!

Meanwhile the UK holds the record for most Covid deaths in Europe, very nearly world beating. Australia were prepared, had a plan and stuck to it.

Just keep on doing what you're doing, it's obviously working.

Love,

Gill xxx




Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 29, 2021 07:53AM Rosiecat wrote:

Hello Peter,

Well done! You must be greatly relieved to have got the vaccination over with. Not too long to wait before you'll have some protection from Covid. Hope Liz will be offered her injection soon. I'm having mine on Thursday morning at the local GP surgery.

Best wishes,

Gill

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 29, 2021 08:37AM sylviaexmouthuk wrote:

Hello HelenLouise,

Thank you for keeping in touch. I was glad to read that all is going well with you. Keep up the good work.

I was glad to know that you also keep up with reading the posts.

We have not heard back from Hana so we do not know how things are going for her.

I am sure Mary will come back to us to let us know how her cataract operation went.

Peter and Liz always have something interesting to say and I am so glad that they have kept with us.

What exactly does heart fraction mean? I am very interested in all things medical.

Keep well and keep safe.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jan 29, 2021 08:53AM sylviaexmouthuk wrote:

Hello Peter,

Thank you for reporting back on your vaccination experience. I was glad to read that all went well.

Thank you for giving the name of that new blood thinning drug that Liz is taking. I was interested to know because one of my cousins has recently been put on a blood thinning drug of the same group. A few days ago I downloaded a leaflet from the NHS on this group of drugs, known as NOAC (non vitamin k oral anticoagulants). There are four different ones but they all seem to be for the same thing. My cousin has been very ill in hospital. He has had diabetes for a very long time and not taken care of himself. In addition, he was diagnosed with atrial fibrillation (racing heart beat) and given the anticoagulant Apixaban, which is, like the others, prescribed for additional risk factors such as diabetes mellitus and hypertension.

It is not raining here in Exmouth at the moment but it will not be long before it is. It was really windy this morning.

Life is pretty routine with us and we are looking forward to Spring and Summer and wondering when we shall be free of Covid-19.

Take care, both of you.

Best wishes.

Sylvia

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jan 29, 2021 09:04AM Rosiecat wrote:

Hello Sylvia,

It's a bright reasonably warm day here. Like you, I find the endless wet, dull days of January very depressing. Spring isn't far off though, both cats are running around in the field, a sure sign of impending Spring. Up until today they've spent most of their time sleeping, waking just long enough to munch a few cat biscuits.

Apparently, cancer treatment, chemotherapy and radiotherapy is going ahead as normal at Norwich hospital. I'm not sure if it's the same for cancer surgery though. I asked about this in December when I had my last Zoledronic acid infusion and was told that it was. Things might well have changed after the huge surge in Covid infections after Christmas. Why on earth did anyone think that meeting up with family over Christmas was a good idea? Government Scientific advisors were opposed to any kind of easing of lockdown. It was simple common sense.

I had a phone call from the local GP surgery this morning inviting me to have my vaccination at another surgery in the same group. I'm also being offered an appointment for the second jab in twelve weeks time. All seemed very efficient. I'll let you know if there's any short term side effects.

I really don't understand why some surgeons fail to follow tried and tested diagnostic protocols for cancer. I understand that cancer isn't always easy to diagnose and sometimes cancers are missed, but not to do very basic tests is disgraceful. The poor woman with supposed blood cancer that I mentioned earlier, was left broken by the very harsh chemotherapy she endured. Her compensation was less than £80,000. I don't think that's nearly enough. I thoroughly researched my diagnosis, our doctors are not always right. I would advise patients to question everything they don't fully understand, if in doubt go for a second opinion at another hospital. Don't let anyone fob you off or make you feel that you're being a nuisance.

I wonder how adagio is getting on? No doubt she's still very tired. We haven't heard from Jags for a long time. Hope they're both well and keeping safe. I don't know how well the vaccine roll out is going in either Canada or India.

That's all for now.

Hoping for some brighter weather to come your way for the weekend.

Love,

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 30, 2021 08:42AM helenlouise wrote:

hello Gill and all,

My understanding is the fraction means how well your heart is pumping. Herceptin has the potential to impact how well your heart can pump. My MO said my ejection fraction is still better than his even though mine is slightly less than the previous test result. So I am happy to go with that although if my EF continues to decrease I think I need to consider is the treatment worth a heart issue?

Xx

Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)
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Jan 31, 2021 06:18AM Rosiecat wrote:

Hello Helenlouise,

Thanks for explaining fraction. I had no idea that Herceptin could affect heart function. Hope this doesn't result in you having to make a difficult decision in the future.

Gill xxx


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jan 31, 2021 09:12AM cocolala wrote:

Hi all,

I have talked to my oncologist and he told me that even if lymph nodes are clear, he still need to see the surgery findings before he decide whether or not to have further treatments. If he thinks that I do need to have chemotherapy, it would be 4 doses (3 weeks apart) + another 4 doses (1 dose split to 3 times weekly). I guess this is what the other oncologist is doing.

I have also went for second opinion with another surgeon who can perform both mastectomy and breast reconstruction. He suggested lymph nodes clearance instead of sentinel lymph nodes removal due to the fact that I'm local recurrence. I am comfortable with this surgeon especially he is patient and not rushing, thus I have confirmed with him for the surgery on 2 Feb. I will be admitted tomorrow morning for PET scan. Hopefully all turns out well.

Dx 3/7/2019, DCIS, Left, 2cm, Stage 0, Grade 3, 0/0 nodes, ER-/PR-, HER2+ Radiation Therapy 5/6/2019 Breast Surgery 5/6/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 5/14/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 6/9/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 9/5/2019 Whole-breast: Breast
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Jan 31, 2021 10:36AM Rosiecat wrote:

Hi Cocolala,

I'm very glad that you've had a second opinion from a surgeon who seems less rushed and more patient with you. We all need to feel that we can trust our medical team to do the best for us.

Everything's moving very quickly for you now - this must be a huge relief. I know that I felt much more confident about the future once my treatment was underway. Good luck with your PET scan and of course your surgery. Please come back and tell us how your operation went. We'll all be thinking of you, especially on the 2nd.

Good luck!

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Feb 1, 2021 07:18AM helenlouise wrote:

Yes good luck Cocolala and please do let us know how you go.

Best regards.

Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)

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