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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 Jul 20, 2019 01:21PM by sylviaexmouthuk

sylviaexmouthuk wrote:

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

I was diagnosed with a very large tumour, triple negative, in 2005. I had pre-adjuvant chemotherapy, epirubicin, cyclophosphamide, and then docetaxel, followed by right breast mastectomy with removal of seven lymph nodes, only one affected, the sentinel node. I had three weeks of radiotherapy plus boosters. I had very few side effects from all of this treatment, except fatigue. I am still in the clear after 14 years and 01 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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Jul 5, 2019 02:17PM SusieW5 wrote:

Hi Gill,

Not sure how old Louise, the receptionist, is but might well have been pre-menopause four years ago. Her hair remains thin, thanks to the Tamoxifen.

I was also asked if I had taken HRT, which I didn't.

I think if you're going to have breast cancer, then post-menopause is best.

Susie xx

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/13/2018 Lumpectomy Chemotherapy 4/19/2018 Radiation Therapy Whole-breast: Breast
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Jul 6, 2019 11:02PM marias wrote:

Hello!!! In May 2019 a thoracoscopy for two nodules in the right lung , result triple negative .cancer metastasis in both nodules .. now in chemotherapy of Gemcitabine and Carboplatin for 6 months. I have finished one cycle.I have the plates in 550.

The doctor sent me a microsatellite instability test. She told me that since there was no instability in my test, I was not a candidate for immunotherapy treatment. Some of you did that test.

I'm really sad and worry.

I feel that I do not think anything deeply. my younger sister who lives in Bogotá came for 20 days to accompany us. My mother comes in August and will be here until November.

I have been very overwhelmed with all this and with the implantation of the subdermal catheter and I also had a biopsy of subcardinal lymph nodes that also came with metastasis of breast cancer. so just today I have had some energy to enter to visit them. I trust you are all in good health and enjoying the summer .

In Colombia killing us every day !! those of the extreme right who for many years forged paramilitary armies that supposedly more than 10 years ago surrendered their weapons during the Uribe administration. now they are systematically killing social leaders. the government says that is not true but the figure amounts to 700 or more. so the news from my country is not encouraging.

I'm so sorry to be so negative. And depressed.

Abrazos

Marias

Dx 11/19/2016, ILC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 12/26/2016 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Dx 7/4/2017, ILC, Right, 1cm, Stage IIA, Grade 3, 1/19 nodes, ER+/PR-, HER2- Surgery 7/4/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 9/4/2017 Whole-breast: Breast, Lymph nodes
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Jul 7, 2019 06:34AM Rosiecat wrote:

Hello Marias,

It's good to hear from you even though your news is not so good. I'm sorry that you have triple negative cancer in both lung nodules and that you're not a suitable candidate for immunotherapy. How are you coping with Gemcitabine and Carboplatin?

I'm not at all surprised that you feel overwhelmed, you have had such a lot to take in. You really don't need to think about anything deeply if you don't want to, taking each day as it comes might be the best plan at the moment. I'm so glad that you have your mother coming in August, this isn't the time to be alone.

Here in the UK we haven't heard very much about the problems in Colombia recently. However, We have known about the political and social unrest for some years. It doesn't surprise me that the far right are killing social leaders. As always, it is the the law abiding majority or those determined to raise issues of social justice, who suffer most. The world appears to have gone mad!

Dear Marias, I will continue to think of you, pray for you and to light candles for you.

With love,

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 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 7, 2019 07:10AM Rosiecat wrote:

Hi Susie,

I agree that post menopause seems to be the best time to have breast cancer, whatever the type. Not sure I'd be keen on taking Tamoxifen for 10 years as it can can cause cancer of the uterus. Oh the joy of being born female!

My wig itches, but hair isn't long enough to be cut into something that makes me look vaguely normal.

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 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 8, 2019 04:15AM sylviaexmouthuk wrote:

Hello Marias,

Thank you for your post. I was so glad to hear from you, but very sorry that you have metastases to the right lung and that this is triple negative. I am not surprised that you feel sad and worried. Concentrate on the positive side of this news and the fact that you can have six months chemotherapy with gemcitabine and carboplatin. Tell yourself that you will get through this and keep in touch with us to support you.

I was glad to read that you have some family support and that your sister from Bogotá came to visit you.

It is good that your mother will come for a long visit. I am sure that will give you a lot of support.

It is so sad that there is so much trouble in Colombia. All this killing and warfare serves no purpose. The world is in such a mess and it is all to do with power, bullying, greed and sheer stupidity. Humans are destroying the planet. With warfare and fighting it is always the innocent people that are the victims.

Concentrate on yourself and getting yourself better.

Try to keep in close contact with us and share your worries and anxiety with us.

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: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 8, 2019 04:21AM sylviaexmouthuk wrote:

Hola marias

Gracias por tu publicación. Me alegró mucho saber de usted, pero lamento mucho que haya tenido metástasis en el pulmón derecho y que esto sea triple negativo. No me sorprende que te sientas triste y preocupada. Concéntrese en el lado positivo de esta noticia y en el hecho de que puede recibir quimioterapia durante seis meses con gemcitabina y carboplatino. Dígase a sí mismo que lo superará y manténgase en contacto con nosotros para brindarle apoyo.

Me alegró leer que tiene algún apoyo familiar y que su hermana de Bogotá vino a visitarlo.

Es bueno que tu madre venga para una larga visita. Estoy segura de que eso te dará mucho apoyo.

Es tan triste que haya tantos problemas en Colombia. Todo este asesinato y la guerra no sirven para nada. El mundo está en un desastre y tiene que ver con el poder, la intimidación, la codicia y la estupidez. Los humanos están destruyendo el planeta. Con la guerra y la lucha, siempre son las personas inocentes las víctimas.

Concéntrate en ti mismo y en mejorarte.

Trate de mantenerse en contacto con nosotros y comparta sus preocupaciones y ansiedades con nosotros.

Mucho amor.

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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Jul 8, 2019 06:32PM viewfinder wrote:

Hi Sylvia,

You asked me to update you on my sister and I appreciate your concern.

She had a salpingo-oophorectomy and double mastectomy today. They wanted to remove her uterus but she said no at this time after hearing it was a 3-4 month recovery. The surgery was about 5 1/2 hours.

Her friend that is staying with her texted me about two hours ago:

"Linda is out of surgery. She gets an A plus. All vital signs stable. She has two small incisions in her abdomen. Her chest is bandaged with a drain on each side. She will be awake in an hour or so. Then transferred to her room. The surgeon is VERY happy with the outcome."

I'm so relieved. Thank God for the skilled surgeons and a sister so full of courage!

My thoughts are with you all!

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)
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Jul 9, 2019 06:19AM SusieW5 wrote:

Morning all,

I was wondering if anyone had read Anticancer by Dr David Servan-Schreiber, a psychiatrist who found he had a brain tumour at the age of 31? I downloaded a sample to my Kindle this morning and it seemed very readable so I've gone ahead and bought it. One of the things he mentions in the introduction is the negativity surrounding all talk of cancer and how counter-productive it is.

Susie xx

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/13/2018 Lumpectomy Chemotherapy 4/19/2018 Radiation Therapy Whole-breast: Breast
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Jul 9, 2019 09:09AM maryna8 wrote:

Hi, Susie

I have this book you mentioned "Anti-Cancer, A New Way of Life". I like it, I donated most of my other books on cancer, but kept this one. I was also interested in what he says about negativity, and the bad effects of it and also stress, on one's body and mind. He has quite a story to tell about his own battle with brain cancer.

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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Jul 9, 2019 09:47AM sylviaexmouthuk wrote:

Hello Viewfinder,

Thank you for popping in to let us know how your sister got on.

I was glad to know that she is recovering well after all that very long surgery. I can understand that she did not want more surgery with such a long recovery time.

I was glad to know that she has a friend staying with her.

I can understand how relieved you must be that all has gone well.

Take care of yourself and pop in when you can.

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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Jul 9, 2019 09:55AM sylviaexmouthuk wrote:

Hello Susie,

I did read the book Anticancer by Dr David Servan-Schreiber quite some years ago now. I was going to say that Mary had read it as well, but she popped in before me. I knew the name because there was a famous politician by that name when I was in France and I think they were brothers. The doctor did die eventually.

I am sure you will find the book of great interest.

I seem to remember that we discussed it on the thread in the past.

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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Jul 9, 2019 05:40PM maryna8 wrote:

HI, Marias

I am so sorry the docs have found triple-negative metastases, you have certainly had a lot to deal with. I hope the chemo is not too difficult. I can understand you don't feel you think anything deeply, just getting through treatment is quite enough to think about now. I pray it is successful.

I am so glad your sister from Bogota is visiting you, and I am glad your mother is coming soon to stay till November. That will be so good for you.

The news you speak of from Colombia sounds very grim. I have tried to find news stories on these events, and I have not found any yet. That is a part of the world that we don't hear much about, I'm sorry to say. Most of what I did see was about pipelines and oil. Please stay safe, and enjoy your time with your family.

I am still lighting candles for you, and Hanieh too. We haven't heard from Hanieh for a long time.

Best wishes, hugs and 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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Jul 9, 2019 06:09PM maryna8 wrote:

HI, Sylvia

I can't believe it's been a week since I've posted to you, it's been busy through the holiday, and then my arm is better so I can do more outside, thank goodness. My farm is now very dry, we are in the time of year when rain is widely scattered and I count myself lucky if rain falls on my things so I don't have to water.

I was sorry to read that the doctor who wrote "Anti-Cancer", has died. He wrote a powerful book about his experience, and I agree with many of his theories about causes of cancer.

I got my copy of WDDTY, with Fibromyalgia being the subject of the cover. I haven't read it all yet, but only a few pages.

I am sorry to see that Marias continues to have serious problems, it is hard to fathom all that she has been through.

I enjoyed seeing the pictures of you and the flowers you care for in your surroundings. You and the flowers look great!! Here it is now very hot, and the flowers I have are looking a bit wilted. I will have to get out tomorrow morning and water my pots.

The politics in both our countries are strange indeed, and the politicians are not very admirable people for the most part. With exceptions.

I will close for now, and will talk to you again soon, my friend.

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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Jul 10, 2019 02:26AM - edited Jul 10, 2019 10:06PM by Kathseward

hi Everyone

Back from my month holiday in the sun and back to dreary winter! Flu has hit very hard here so we have been extremely busy on the public health front.

I have completed both a clinical assessment unit and a research unit at uni and did extremely well in them much to my surprise. It has been really great to be able to concentrate on other things and keeps my mind away from those dark places. Only have 3 units left to become a Nurse Practitioner

My aches and pains have been better with weekly massage but i still manage to fixate on the worst things. Due for my mammogram in sept and terrified about that! Can see some changes in the shape and density of my irradiated breast but no lumps so I'm hoping it's radiation changes from the boosts!

Been visiting my grandsons which is a joy and keeps me focused. Stay well everyone

Much love

Kath

Dx 7/6/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 7/7/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2016 AC + T (Taxol) Radiation Therapy 1/30/2017 Whole-breast: Breast, Chest wall
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Jul 10, 2019 07:48AM ucfknights wrote:

hi girls. My mom has 2 taxols left. We see the BS today to scheduke MRI for breast. I am truly so scared. I keep thinking the absolute worse that the chemo didn’t work and it turned into mets. I really want some survivor stories.. my anxiety won’t let my thoughts re

Dx 1/23/2019, DCIS/IDC, Left, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/4/2019 Lumpectomy: Left; Lymph node removal Chemotherapy 3/11/2019 AC + T (Taxol)
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Jul 10, 2019 08:25AM maryna8 wrote:

Hi ufcknights,

I do hope your mom is okay. It seems an odd time to have an MRI, when chemo isn't finished. Or perhaps the MRI will be scheduled for after she is finished with all treatments. Is she having some kind of problem, or has she complained of anything to the doctor? I feel as if we are missing some of the story. Again, I do hope all goes well for you and your mom.

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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Jul 10, 2019 09:15AM ucfknights wrote:

maryna, mri will be scheduled after chemo is done to prepare for mastectomy. She had a lumpectomy but after we thought about it we think a mastectomy would give more peace of mind. She isn’t having any complaints, she’s tolerating chemo well

Dx 1/23/2019, DCIS/IDC, Left, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/4/2019 Lumpectomy: Left; Lymph node removal Chemotherapy 3/11/2019 AC + T (Taxol)
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Jul 10, 2019 06:06PM maryna8 wrote:

Hi ucfknights

So she is doing a mastectomy for peace of mind, and then the surgeons will be sure they have everything. Sounds good to me! The docs were going to do lumpectomy on me, but since my breasts were small, they said there wouldn't be much left after getting clear margins around the tumor. So they took it all and I was glad. I do still have left breast.

In answer to your PM message, I am doing good, it did take me a long while to get over the chemo. The neuropathy is still with me. I injured my shoulder during chemo and didn't get surgery until March '19, still getting over that.

Talk to you again, 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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Jul 11, 2019 07:57AM Rosiecat wrote:

Hello Sylvia,

I expect you've already read that the French government has made the decision to phase out payment for homeopathic treatment. I think we have to assume that only 'proven to work' meds will become the norm as governments run out of money for healthcare. It's so difficult to assess the efficacy of homeopathy, vitamins and mineral supplements etc when used alongside accepted medicines.

I had some bad news earlier this week. A very dear friend who was diagnosed with TNBC two years ago has just been diagnosed with TNBC in the other breast. After lumpectomy, chemotherapy and radiotherapy the first time around, she has to go through the whole process again. The surgeon was vague when she asked if it was primary or secondary so she won't know until after her surgery. It doesn't help, but I'm so angry on her behalf.

The weather here is has been mixed. Generally warm, sometimes overcast with the odd surprise shower thrown in. The garden is growing so quickly though it's always difficult to maintain control at this time of year.

I shall see if our library has a copy of the book Susie recommended.

Take care of yourself and Raymond.

Love,

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 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 11, 2019 08:20AM maryna8 wrote:

HI, Gill

I'm lagging with posts too, since my arm is better I have begun to do some of the things outside that have been neglected all through spring and summer. I still can't lift heavy weight and my arm tires quickly but at least I can do some things. I got the mower out and did some of that , and did some weed-eating that my lawn-teen-ager is oblivious to, amazing because he walks right past the weeds whenever he's here. I have stubbornly not told him, I keep thinking he has to see them. No matter now, I will do it. Many weeds remain in flower beds and odd corners everywhere. I am trying to keep being patient, I am now over 4 months in, but not considered ready for full activity till 6 months.

It sounds like your village had quite a party last weekend, no beer left in the neighborhood! I had a good time on the 4th, went to my step-daughter's house, she had a large gathering of family and friends. Everyone ate, drank and at dark they shot off a lot of fireworks. On Saturday I met up with a group of friends, we are a sad lot lately. One of them has very recently lost her husband to kidney cancer, one has recently been diagnosed with lung cancer. We had a good time nevertheless.

The earthquake in California was far south of where I was on my trip, but I think the whole area is vulnerable. I am pretty sure the people in the area where I was felt some shaking. That would be frightening. The state I live in has a huge fault to the south of where I am, they say it will go off sometime, it is called the New Madrid fault. It was forecast to shake about 20 years ago and people moved breakable things and prepared for the worst and nothing happened. Like the boy who cried wolf.

I saw your post above where you mentioned HRT. I took these pills as therapy after my hysterectomy. I was told the benefits far outweighed the risk. I wonder......I have asked this question of 2 oncologists and they really don't know if that was a factor in my TNBC diagnosis or not.

Today is going to be temperate since there was a little rain that came through yesterday, tomorrow back to high heat. Seize the day I suppose.

Talk to you again soon, 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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Jul 11, 2019 10:30AM maryna8 wrote:

HI Kath

So you are back from your holiday with a bang, back to dealing with influenza. We over here get the flu vaccine you Aussies are using now is it any good this year? I managed to get through last winter with no flu, my pattern has been about every 2 years, hope my immune system is strong enough now to carry me past it without getting struck with it..

Congrats on doing so well with your studies, how impressive that you are so close to being a Nurse Practitioner! Over here they often stand in for the Doctors, and are invaluable to their practices.

I'm afraid aches and pains are just part of life now, darn it. Have fun with grandsons, and good luck with mammogram!

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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Jul 11, 2019 11:45AM SusieW5 wrote:

Hi Gill,

One of the first questions I asked my oncologist was whether having cancer in one breast made it more likely you would get it in the other. Her reply was yes, but only slightly. It's likely that your friend has another primary but what a horrible prospect of having to go through it all again.

Susie xx

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/13/2018 Lumpectomy Chemotherapy 4/19/2018 Radiation Therapy Whole-breast: Breast
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Jul 11, 2019 12:24PM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your latest post. I have not yet bought the current edition of WDDTY. I shall probably buy it when I next go shopping in the store where they stock it.

I am glad you enjoyed the photographs of the grounds in the complex where I live. Everything looks really good at the moment but we now urgently need rain and some cooler temperatures. It is veery humid here and not very comfortable.

It is good news for Kath that she has done so well in her exams.

I do hope that Marias will get back to us. She has been through too much and I do hope this next lot of treatment will go well.

As for Hanieh, I really do think that she has left the thread now. I do hope she and her family are well and coping with all the trouble that Iran is going through. I am so fed up with all the trouble in the world and none of it serves any purpose.

I do not know where we are going with orthodox cancer treatment. I read the other day that there are 200 different cancers, so I do not think we are going to get a vaccine. The orthodox treatment can bring people to NED but the side effects that can remain for life are no picnic. We just do not know how much damage has been done to our bodies. All we can say is that we are alive.

I have just bought the latest edition of the New Scientist magazine and on the cover this is what I see: Convoluted studies, Cherry-picked evidence, Contradictory advice: Why everything you know about nutrition is wrong – Red meat, Eggs, Carbs, Fat, Sugar, Fibre.

The article is on page 32 and the title is Everything you know about nutrition is wrong – why almost all food advice is fatally flawed.

I shall comment more when I find the time to read it. It is 4 pages long. I do like the picture on the first two pages. It is of two fried eggs in a frying pan, one with a happy face and one with an unhappy face.

I saw that you have been talking to ucfknights, another American, and another one who is posting for her mother. Perhaps Flora will pop in or even LoveandLight, Sarah, who were both posting for their mothers. We are such a small group of regular posters now.

That is all for now.

Love.

Sylvia xxxx


Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 12, 2019 12:49PM flgi wrote:

Hello all,

I just wanted to pop in to send you all my good wishes.

I have been having some “time off” thinking about cancer, but don’t want to leave the thread completely as it’s been so valuable to me.

My mother is now about 3-4 months out of chemo( can’t actually remember the exact amount of time- a sign maybe of trying to return to some sort of normality).

She still doesn’t feel well exactly, though the chemo side effects are less extreme than they were, particularly those affecting the gut( she really struggled with these towards the end) but has moments of “remembering what “well” feels like. And her energy is fast returning. She has now looked after my youngest two children six consecutive Saturdays on the trot- no mean feat!

Her first post chemo mammogram was fine. She hasn’t been offered a CT scan, but I think they prefer not to do one unless there are any obvious symptoms. Did others have one? I know Sylvia did. She has also had her first biophosphanate treatment.

How are you all?

I will try to catch up on the thread.

I hope your colitis is more under control, Gill, and your shoulder getting ever better, Mary.

Helenlouise and Marias, I think you had had signs of some kind of recurrence? I hope the doctors are throwing all the wonders of modern medicine at you and you are feeling well cared-for.

Susie, I hope you’re enjoying swimming again. I’ve really got back into it again this year- such lovely weather we’ve been having! I’ve plunged into lakes, rivers and the outdoor pool over the last few months!

Anyway much love to this very close and helpful internet community

Flora x

IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
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Jul 12, 2019 03:50PM SusieW5 wrote:

Hello, Flora,

Yes, it's good to get in the pool on these muggy days. I didn't have a CT scan after treatment. I think these are not routine now as they may have been when Sylvia was being treated. I had one early on to make sure there was no sign of spread and one to plan my radiotherapy.

It is hard when you're ill to remember what it feels like to be well. I hope your mother gets back to feeling well all the time.

Susie xx

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/13/2018 Lumpectomy Chemotherapy 4/19/2018 Radiation Therapy Whole-breast: Breast
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Jul 13, 2019 08:39AM ucfknights wrote:

2 more taxols!! With the loads of supplements and icing for the entire infusion and pre meds (about 3 hours) no neuropathy yet. BMX scheduled for aug 19. Super excited for this to be over for my mom but also super anxious and scared for her MRI prior to surgery. Any positive thoughts? I can't stop worrying that the chemo didn't kill all the cancer cells. She didn't have many SEs either which worries me

Dx 1/23/2019, DCIS/IDC, Left, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/4/2019 Lumpectomy: Left; Lymph node removal Chemotherapy 3/11/2019 AC + T (Taxol)
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Jul 13, 2019 03:12PM Rosiecat wrote:

Hi ucfknights,

I wouldn't worry about your mom having few side effects from chemotherapy. I had quite a few and asked my oncology specialist nurse if that meant my chemo was working particularly well. She said that side effects were absolutely no indicator of effectiveness.

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 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 13, 2019 03:29PM Rosiecat wrote:

Hello Flora,

Good to hear from you and I'm so glad that your mother is getting her energy back. Problems with the gut are difficult to cope with, I hope they disappear once and for all very soon. My colitis is easier to control now that I know which food is out of bounds.

You needed to get away from thinking about cancer all the time. Dropping in with updates now and then sounds like a good idea. I know many of us are interested in what you and your mum are getting up to.

I'm very impressed that you swim in lakes and rivers, does this make you a wild swimmer?

Look after yourself and give my best wishes to your mum.

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 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 14, 2019 06:18AM sylviaexmouthuk wrote:

Hello Flora,

Thank you for popping in to bring us up-to-date with your mum. It sounds as though she is doing fine. It does take quite a lot of time to feel exactly right.

I would not worry about your mother not having been offered a CT scan. If you can avoid these scans I think it is safer. There is quite a lot of radiation exposure involved in a CT scan.

After finishing treatment the best thing is to keep looking forward and put cancer in a dark corner somewhere.

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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Jul 14, 2019 06:28AM sylviaexmouthuk wrote:

Hello ucfknights,

Thank you for your posts. Just try to take one thing at a time and be positive for your mum. Going through chemotherapy is a long process and most of the women that have gone through this thread that I started back in September 2010 have found it the most difficult part of this journey. Let your mum concentrate on getting through this and then she can get ready for the next part of the journey. With just two more Taxol infusions to get through she is nearly at the end of that long journey.

She will need to rest up a bit and recover from the chemotherapy in order to get ready for a bilateral mastectomy on August 19th.

Let us know how she gets on with the MRI scan prior to her surgery.

Will she be having any radiotherapy?

Wait for the final result at the end of all the treatment and look forward to her having a good pathology report of NED (no evidence of disease).

Thinking of you.

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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