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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 Nov 20, 2018 05:11AM 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 13 years and 05 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 11/1/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/17/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/15/2006 Breast
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Dec 5, 2018 02:37PM SusieW5 wrote:

Hello All (or all Brits, anyway)

Anyone come across the Patient Knows Best website? I got an email from Imperial Hospitals (Charing Cross & Hammersmith), along with a pass-code texted to my mobile so I could set up an account on this. It lists all my appointments this year so is a useful reference and I am allowing this basic information to be accessed by medical professionals.

Gill, good luck with tomorrow's chemo and with the PICC line.

I've been wondering about Flora's mother too.

There is still some blossom on my honeysuckle outside the French windows.

Susie

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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Dec 5, 2018 03:44PM Rosiecat wrote:

Hi Susie,

Just visited the website, but never heard of it before. I wonder if the Norfolk and Norwich will be in touch with me when my treatment is over? I haven't kept any electronic details of my treatment since diagnosis, but have a folder that contains the whole lot.

My honeysuckle was all leaf and no flowers this year. I do have a pink rosebud ready to open though. Also some snapdragons are hanging on.

Looking foreward to achieving my chemo halfway mark tomorrow. I've promised myself that I can then do some stuff for Christmas. I haven't even made a Christmas cake yet, usually it's wrapped up and in a tin by mid November, having a twice weekly feed of brandy - and so am I. Have to admit that my Christmas cards are always a bit last minute.

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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 5, 2018 04:48PM SusieW5 wrote:

Hi Gill,

Will you be having your first taxane on the 27th? Or do you get a bit more of a break over Christmas?

Susie x

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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Dec 5, 2018 04:48PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post. The problem with hyperparathyroidism or hypoparathyroidism is that it is not included in general blood tests, but I think it should be there, along with the thyroid blood test for hyper- or hypo-thyroidism. Marias who used to post on the thread had breast cancer and then thyroid cancer. She went through a lot and I have no idea what is happening to her now. With hyperparathyroidism you can end up in a coma.

I was glad to read that you had your PICC line fitted this morning and that you have had a blood test. I was glad to know that your white blood cells are almost back to normal and I do hope you will be fine for your final FEC treatment tomorrow. Please let us know how you get on.

I think the gardens are in a state of confusion with the extremes of climate and the never ending changes. Here in Exmouth we have one day mild then one day cold and endless rain, not to mention wind.

It seems as though we are all wondering about what is happening with Flora and her mother. It is a long time since we heard from her and it could be that she is just too busy. I hope her mother is alright.

It is of great concern and somewhat frustrating when people just stop posting. I do wish they would politely let us know that they are moving on. We have not heard from Helen either who was also looking after her elderly mother. I do not think we got to know whether her mother decided on treatment or not. I have also been thinking of Sarah another Brit who was looking after her mother with breast cancer. I wonder whether we shall ever hear from any of them?

I do understand that it is good to have more posts so that we get to know other people's experiences as they go through cancer treatment. If we all just view, there will be no thread.

Good luck for tomorrow.

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 11/1/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/17/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/15/2006 Breast
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Dec 5, 2018 05:03PM sylviaexmouthuk wrote:

Hello everyone,

I was just wondering whether any of you have read the latest edition of New Scientist? There is an interesting article entitled Why Supplements Don't Work – It's not just what you eat but how you eat it. Inside there is a cover story The truth about supplements. Has anyone else read this?

I also have the latest edition of What Doctors Don't Tell You and there is some interesting information about CBD in an article entitled CBD: more hope than dope - it's the extract from cannabis that has healing qualities across a range of diseases, from epilepsy to cancer. There is a mention of triple negative breast cancer and how it can stop the growth of this cancer. You might want to read this. I get the impression that CBD is big news everywhere. Has anyone read this magazine?

That is all for tonight. Did anyone watch Doctors behind closed doors on Channel 5 this evening? I found it quite shocking.

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 11/1/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/17/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/15/2006 Breast
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Dec 6, 2018 05:42AM sylviaexmouthuk wrote:

Hello everyone,

I am posting two more photographs of sunrise here in Exmouth. This was at 7:30 am this morning. The photographs do not really give the dramatic sunrise that it was. We are now back to the usual rain and gloom, not to mention the doom and gloom of all the news.

Are you all busy preparing for Christmas?

Do not forget that for many they will be going through treatment during this period and they do need your support.

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 11/1/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/17/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/15/2006 Breast
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Dec 6, 2018 09:20AM - edited Dec 6, 2018 12:37PM by SusieW5

To the opticians this morning for my regular eye test. No sign of any ill effects from treatment. Treated myself to a new pair of glasses which turn into sunglasses in sunlight.

My pubic hair is growing back. Thought I'd share that!

Susie

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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Dec 6, 2018 11:47AM sylviaexmouthuk wrote:

Hello Mary,

I have really missed you this week. I hope all is well and that you are just taking a break.

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 11/1/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/17/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/15/2006 Breast
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Dec 6, 2018 11:57AM Rosiecat wrote:

Hi Susie,

Pleased your eyes are good, My Oncologist told me not to have my eyes tested until after chemotherapy, so I'm happily looking at frames online. I only need glasses for reading and close work so far.

As.for your other good news, well er, thanks, that's also something to look forward to!

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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 6, 2018 01:55PM Rosiecat wrote:

Hello Sylvia,

I thought that I'd sent you a long reply, however, the whole thing has disappeared.

Quick recap.follows:

I'm particularly interested in CBD. There's some very strong evidence of the healing properties of medicinal cannabis. Trials are taking place, but years could go by before NICE approves it. I can remember a long discussion I had with a patient who believed his cancer had been held at bay for years by cannabis oil. In the end he could no longer obtain his supply. Produced illegally it's a very time consuming and risky process. Sadly, his cancer returned. I do think the NHS should move more quickly on this one.

Michael will be off to the library sometime soon, I'll ask him to have a look at the New Scientist article.

Hope the 'Doctors behind closed doors' documentary wasn't quite as bad as ' Undercover Nurse'. I watched this a few years ago. Shortfalls in staffing are one thing, but the nurses here were nothing less than cruel and where were the Doctors? Interesting that the undercover nurse was struck off asap. I'm going to see if I can watch channel 5 online.

I did have chemotherapy today after more blood tests just to be sure that my body was up to it. So, I'm now very pleased to be halfway through, but can't celebrate with the pleural effusion hanging over me.

Michael has taken a few uplifting photos for me since chemotherapy began, I'll post them very soon, but must send this before the Gremlins grab it again.

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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 7, 2018 07:30AM Rosiecat wrote:

A Norfolk sunrise, my front garden

Fairy Ink Caps, on a willow stump, taken last year. These are apparently edible, didn't risk it.

A Church in central Norwich on the evening of Armistice Day. The bells rang out for a full 5 minutes at midnight across Norwich.

Pigeon caught in a rainbow over our front garden.

Love from 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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 7, 2018 09:28AM maryna8 wrote:

Hi, Sylvia

I am here, and okay, it's just been another crazy week. The contractor who agreed to do repairs on my old farmhouse started this week and it rather threw me off. I had been dreading it and yet it had to be done, since some of the old walls that had been wet in the past were disintegrating. So it could be worse, it is only one room and a bathroom, and the walls are not gutted to the outside, but still is a very messy, filthy process to rip off the wall layers of 100+ years. The man arrived a day early, so the day I had picked to get everything out of cabinets, chests and off walls was the day he came, and I ran around like a crazy person getting it done, because he is a very fast mover and was starting immediately. I arrived yesterday to move a few more things and had to leave when finished because the dust was choking, ugh, I will have to find someone to help me clean when all finished, I fear. I did not anticipate the amount of dust, I only wish I had covered all the furniture, I picture people sitting on couches and little puffs of dust coming up for a while!

I have also been trying to finish Christmas prep, since I go to several places over the holidays gift-giving is common to all of them, especially to the small children, not always the adults. Also food, always a necessity. On top of it all, the church I go to is planning a Midnight Mass, so our little choir has been practicing with mostly standard Christmas hymns, but a couple of new ones that have been giving me fits. I am the only alto and my part on one of them is discordant in many places, it does not come naturally to me to sing this way, and I have to work at it. And just the fact that it is at Midnight will be a struggle, and will seem very unusual, I have not roused myself to go to a Midnight Mass for many, many years.

I have been trying to keep up with posts and have seen that Gill has had a PICC line put in, thank goodness, she has had another chemo treatment and is half finished. Susie sounds good, and Helenlouise checked in. As for the non-posting posters, it would be nice to know what has happened with Flora's mother and the others who have gone missing.

I think I have subscribed to WWDTY, I'll have to go back and check. I do like that publication. As for the CBD oil, I do have some but take it only sporadically. I was told to take it regularly to get the benefits but I don't always think about it. It is the kind without the THC, as that is still illegal in our state. Medical marijuana was on the ballot in November and was voted in, so it it will be interesting to see how that all plays out.

It is very cold here now, it is hard for me to believe that some of you still have plants with flowers on them.

To cap all this off, my knee has been giving me very sharp pain, so I have made an appointment for next week to have another injection of steroid. I always think the injection doesn't work until it wears off and then I realize it was working to the best of its' ability!

I will be back as soon as I can, love,

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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Dec 7, 2018 09:31AM maryna8 wrote:

Hi Gill

Your pictures are beautiful, so vivid. Are they taken with a phone or an actual camera? Pigeon in a rainbow, wow!

Congrats on being half-finished with treatment, and glad you have a PICC line installed. Installed doesn't sound right somehow??

Do you still have fluid in or around your lungs?

Talk later, love

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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Dec 7, 2018 11:15AM Rosiecat wrote:

Hi Mary,

Not envying you your house repairs. Impressed that a workman turned up a day early though. You're so right about dust, gets everywhere whether you cover stuff up or not.

PICC line is such a relief, no more stabbing about searching for a vein. White cells were just up enough for me to have my last FEC treatment. The coice to go ahead was left entirelly to me. Would like to celebrate being halfway through, but I won't see my Oncologist until the 21st and then I'll probably have another chest X-ray. Hoping for the best.

Michael takes his camera everywhere, Norfolk's full of wildlife so there's plenty to see.

Hope your steroid injection works. What a rotten sense of timing your knee has. Workmen to cope with, Christmas and your special choral appearance at Midnight Mass. Priests and choirmasters can be very persuasive. You'll have to be quicker with the excuses next year. You're very fortunate to have a good singing voice, my teachers always asked me to mime so as not to put the other children off.

Good luck getting on top of the dust.

Keep warm,

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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 8, 2018 12:10PM sylviaexmouthuk wrote:

Hello Mary,

I was so glad to hear from you. I read very carefully what you have been doing this past week in your old farmhouse and it seems like very hard work. Please make sure you do not overdo things. Be careful with all that dust. Once again, I am trying to picture your living set up. Do you live in a house there, but also have a furnished farmhouse on the same grounds? It must be a lot of hard work keeping it all up to par.

It sounds as though you have a very busy time during the Christmas period as well. I do hope all goes well.

We have not had many posts lately, which is disappointing so it should not take long to catch up. I do not know where everyone has gone. Gill does need all our support as her first half of her chemotherapy treatment, FEC, has not been without problems. She does keep herself well-informed and her posts are always interesting. As for Susie, she seems to be doing well and has a good sense of humour. I do hope that all those who have gone missing will pop in to let us know how life is treating them.

I am sure you will be pleased with the magazine What Doctors Don't Tell You. I recently bought the December edition and on the cover the title is Let there be light – Healing arthritis and muscle pain with lasers. The main topic in this months issue is all about the wonders of CBD and on page 20 there is an interesting article with the title CBD: more hope than dope – it is the extract from cannabis that has healing qualities across a range of diseases from epilepsy to cancer. On page 22 of this article I saw the following: "CBD triggers cell death in breast cancer cells and stops lung cancer from growing and spreading".

Within the article it has the following: "It even stops the growth of aggressive, life-threatening breast cancer and seems to be especially effective in cases of so-called "Triple negative breast cancer". It appears to interrupt the cells' signalling ability to prevent them from spreading.

"CBD spray is an effective pain reliever for patients with advanced and end stage cancer. In one test on 43 cancer patients, researchers from a hospice in Shropshire, UK, discovered that the spray reduced pain and helped the patients' insomnia and fatigue".

There is a lot more on these three pages about how CBD can help with different things and there is also a page advert showing containers of CBD with different strengths. The hemp seed oil goes from 3% to 40%. The price quoted is from £17.49, so it is not cheap.

Do you know much about this product? I have seen it in various shops in Exmouth lately. I do not know what to think.

I was very sorry to read that you are having trouble with your knee. I do hope the injection brings some relief.

I still seem to have too much to do here and keep hoping for more free time.

There is rather a sad atmosphere in our complex at the moment as two residents have very recently died. It certainly makes you think of your own mortality. Today the weather is gloomy and just more and more rain. Tonight we are going to get gales.

That is about all for now. Take care of yourself.

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 11/1/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/17/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/15/2006 Breast
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Dec 8, 2018 12:20PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post. I do agree that it could take years before NICE approves CBD. If it can be beneficial and ant-cancer, it sure beats the toxic drugs etc. that are being used at the moment. There seems to be a plentiful supply of CBD oil in Holland and Barratt here and my natural food store as well as the Grapetree.

I do find that the New Scientist magazine and WDDTY magazine are well worth reading.

I did find Doctors behind closed doors quite hard to take. For my taste it was not professional enough and the patients seemed ill-informed and lacking in self-respect, dare I say!

Thank you for the lovely photographs. I really enjoy looking at them.

That is about all for today.

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 11/1/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/17/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/15/2006 Breast
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Dec 9, 2018 04:37AM SusieW5 wrote:

If you have a KIndle, one of today's KIndle Daily Deals (for 99p) is 'F*** You, Cancer' by Deborah James, which looks as if it might be worth a read.

Susie

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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Dec 9, 2018 06:01AM Rosiecat wrote:

Morning Susie,

Just googled this and there's an excellent preview available.

So much of what Deborah James says rings true for me.The very persistent acquaintances who want to call in for a coffee, just to keep me company ahhhh.She's managed to stay frivolous enough to feel better putting lipstick on - me too.

Don't know about anyone else here, but I find the many people who insist on telling me how brave I am to be the most irritating. What's brave about having absolutely no choice?

Enjoy the rest of the weekend, lovely sunny day in South Norfolk.

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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 9, 2018 07:12AM - edited Dec 9, 2018 07:12AM by SusieW5

Hi Gill,

I agree about the 'bravery' thing. It's up there with the fighting and battling on the scale of irritating.

Having a leisurely day. Shampooed my hair, which doesn't take long! And it's dry in about five minutes. My Santa hat will fit better this year.

Now I'm going to write my Christmas cards. It's crept up on my this year.

Hope the weather stays good in Norfolk for my visit at Christmas. Don't do anything to disturb it -- no rain dances.

Susie

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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Dec 9, 2018 06:01PM maryna8 wrote:

Hi, Sylvia

I am not doing the actual hard work of ripping the old wall materials off and repairing where necessary, I am doing the hard work of looking at all the dust that ensued which is on everything in the entire house. I have not had anything like this done before, and didn't realize that removing the walls of one room and a bathroom in an old house could create so much dust. I had an idea, and went to the house a bit ago and started wiping off the small items and putting them in garbage bags and tying tightly to protect from more dust. But just doing that for less than an hour and I had dust in my eyes, my nose and on my lips. I left and now have a headache, so next time I will take my mask and goggles along; it is a pretty good set and allows you to breathe while wearing it. I think it will work. After being there today without it I remembered I do have a dust allergy, among other things, and I take a shot every week to build up immunity to it. Don't think I'm immune yet.

I live in a run-of-the-mill size brick house, and the farm and house are 9 miles away, with 3 miles of that being a gravel road. It is rather remote. Yes, farmhouse is also furnished. There was water damage to the above-mentioned rooms a whle ago, but with us both being sick we just didn't get around to getting it fixed and it had become quite evident so I am going ahead with fixing it now

The CBD oil is legal here, and sold in a lot of places, and one does not get high from it. Marijuana is not legal here, but my state does now allow medical marijuana including the high. I have CBD oil, but I can't say whether it's good or not, because I don't take it regularly. And yes, it is expensive and there is so much available I'm sure some of it is a rip-off. The brand I have is CVHemp Extract, but I don't know whether to recommend since one doesn't feel anything in particular how to know it is good? But I guess the same could be said for any supplement.

If it really worked to cure and avoid TNBC that would be so great!

My knee is a problem when I am busy and active. If I never did anything but lie about it would not be too bad, but I cannot live like that. Last week I had busy days, and the pain was very sharp. Then I took it easy for a couple of days and the pain was much less, but I do have things to do.

I am sorry about the loss of two of your residents, it does make us think about the fact that we are all just here for a while. That's why I have been traveling and like to push myself a bit, having the TNBC made me very aware of the value of not sitting back and let the opportunity to enjoy this world pass by. I am also aware I should avoid too much stress, and this is a bad time of year for that. I probably do overdo sometimes, but try to avoid doing it on a regular basis.

I hope I did subcribe to WDDTY, and am not just imagining it!

I think I've gone on long enough, talk soon,

Love, 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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Dec 9, 2018 06:11PM maryna8 wrote:

Gill and Susie,

I also don't like being called "brave" or a even a "saint" for just trying to deal with the TNBC thrust upon us. I mean, what is the option?

Gill,

I am so glad the PICC line is working for you, the line my husband had was easy to take care of, and didn't bother him a bit. I hope for the best too, when you have your next chest scan.

Tell Michael he takes excellent pictures.

My singing voice has gone downhill, but our church and choir is very small so I am a big fish in a very small pool.

The dust is a beast!

Susie,

Glad you are enjoying your short hair, I really liked mine when it first came back. It was silvery and curly and flattering, it is different now, back to normal I guess.

You are very "brave" for writing Christmas cards, I have adopted the method of defensive card writing; when I get one, I quickly send one back.

Talk again soon, love,

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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Dec 10, 2018 03:57AM SusieW5 wrote:

Hello, Mary,

Yes, I know what you mean about the Christmas cards. There are some people I haven't seen for literally years so I don't send them a card, and then they send me one so I have to dash out and get one off to them. Still, it's quite nice to have a display of cards on the mantelpiece, though I take them down on January 1st.

My hair's still very short, too short to go out without covering. Maybe in the New Year.

Susie

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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Dec 10, 2018 05:15AM Rosiecat wrote:

Hello Sylvia,

I was saddened to hear that two residents from your complex had died. It must be difficult and yes, reminders of our own mortality are never welcome.

Thank you again for your support. We are a small group here at the moment, but do all look after each other so well, from the enormity of diagnosis to what some might deem to be trivial in the great scheme of things. I guess we all understand the reality of cancer and treatment without the need to make banal comments - I know that people mean well.

The thread will probably pick up after the Christmas rush. I'm always a bit last minute about Christmas and really dislike the hype and panic. Christmas dinner is just a roast with crackers and a few extras. Our Christmas tree has to be put up at the last minute as our two cats are demolition experts, the fairy on the top is a much sought after prize.

Weather here is still bright and sunny. Hope the gales in Exmouth have died down. We used to live in Ivybridge, on the edge of Dartmoor and I can still recall how quickly the weather can change in that part of the UK. More extremes to cope with too.

Take good 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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 10, 2018 05:35AM Rosiecat wrote:

Hi Susie,

So, who told you about the rain dances?

Freedom from hairwashing and blowdrying has definitely been a turning point for me. I've always had shoulder length hair, but I doubt if I'll bother to grow it that long again - just too high maintenance. Like you though, I'm looking forward to seeing it grow back to a reasonable covering. Much as I love my wig, it's going to be hot in the Summer. Would you believe it, while all other hair has long gone, I actually found two really sturdy hairs on my face yesterday, one on the chin, the other on the upper lip - Why?

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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 10, 2018 05:55AM Rosiecat wrote:

Hi Mary,

Looks like you'll be the star of the show in the Midnight Mass choir. Better stay well away from the dust.

The PICC line is so worthwhile. No idea why we have to have it flushed at the hospital here. Used to have distict nurses to do that sort of thing. Our hospital told me that local nurses aren't trained to do the flushing any more. Sure I could manage myself.

Love the idea of defensive Christmas card writing. I have a great pile waiting to be written. One year I cut my list down to the people I actually saw something of during the year. Oh the guilt as cards fell through the letterbox from those newly struck off the list.

Hope the knee injection works.

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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 11, 2018 07:05AM sylviaexmouthuk wrote:

Hello Gill and Mary,

Thank you for your latest posts. I have to go into town soon, so I shall answer later today.

Hello viewfinder,

Thank you for your PM. I just wanted to say that you are quite welcome to post here on behalf of your sister. We have had and have other people posting for their mothers or their sisters. I would be very interested to know what chemo regime she is offered to see if they are adding any new regimes to the groups they already have.

Keep well yourself.

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 11/1/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/17/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/15/2006 Breast
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Dec 11, 2018 08:31AM viewfinder wrote:

Sylvia - I don't know her chemo regime yet. I will post it when I find out. She is having her second surgery next week.

Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes
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Dec 11, 2018 08:47AM SusieW5 wrote:

Hi all,

The appointment for my first 'anniversary' mammogram came through this morning, on January 29th, 50 weeks after surgery.

Susie

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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Dec 11, 2018 09:22AM Rosiecat wrote:

Hello Viewfinder,

I'm sure your sister will find it useful to have an advocate. It's a very supportive group here, sharing information and concerns does make life a little easier sometimes.

Take care,

Gill


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Dec 11, 2018 09:52AM Rosiecat wrote:

Hi Susie,

It's an anniversary that gives us pause for thought and I guess none of us here will ever again attend a mammogram without being anxious, but it'll be another milestone out of the way. You've got a whole Norfolk Christmas to eat your way through first.

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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)

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