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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 05:43AM - edited 17 hours ago 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 10 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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Feb 4, 2019 05:21AM maryna8 wrote:

Hi Hanieh

Thank you, dear! It was a good day, and a warm February day, didn't even have to wear a coat.

5 years ago I would not have thought this day would come, so much has happened in those years.

Take care of yourself, and talk to you 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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Feb 4, 2019 05:27AM maryna8 wrote:

Hi, Susie

Yes, even at the age of 110, although science is trying to make us immortal, I read. By taking bits and pieces and somehow splicing with new parts and so on; but it's possible by age 110 one might be ready to move on, I don't know for sure.

I think the 5-year mark means the odds for survival get better, just another statistic. But a good day, nonetheless.

Thanks Susie!

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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Feb 4, 2019 05:37AM maryna8 wrote:

Hi, Sylvia

I hate to read that you and Raymond have both been struck down by the "crud", as we not-fondly call it here. I had the laryngitis, the sore throat, the cough, the streaming nose and sneezes too, It quite knocked me for a loop, and lingers still but is getting better. It seems to happen when the weather is changing constantly and then so many people have it, as careful as one is these things just move from person to person.

I have been eating mostly soup for over a week, homemade, and nothing else tastes very good.

At any rate, I hope you and Raymond will soon be back to normal, please do take care and don't stress yourself in any way.

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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Feb 4, 2019 06:25AM Rosiecat wrote:

Hi Mary,

Glad you had a real party, even if it was a pre-Super Bowl celebration. I don't think I'd be particularly keen on watching it either. But I don't watch the (arguably) favourite British sport of football either. Absolutely dread the World Cup with it's wall to wall TV coverage.

It's worrying that your second oncologist told you that you hadn't had enough Taxotere before she'd even read your notes properly. I'm beginning to think that most oncologists haven't a clue how difficult chemotherapy is. It's poison for Heaven's sake. I only have two more treatments to go. My next session should be on Thursday, but I still haven't seen my oncologist and my appointment has not been mailed to me. Neither do I know if my dose of Paxlitaxel has been lowered. Still nauseated and the Norovirus symptoms haven't completely gone. Guess my body is having difficulty fighting it off. I really think everyone should see their oncologist after every treatment.

It's not too cold in Norfolk, though it usually falls just below freezing at night. Envy you having an unseasonably warm start to February. As a child living in the Midlands I remember February as a very cold month with a great deal of snow. Schools stayed open, trains and buses still ran. A few centimetres of snow nowadays and the whole country grinds to a halt. I had a long walk to school and always had chilblains in my toes. Loved the snowball fights and the long slides we made across the playground. The teachers often joined in. Lots of broken arms and collarbones (not mine), but it was huge fun.

Keep away from all those Winter coughs and colds.

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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Feb 4, 2019 08:31AM maryna8 wrote:

Hey Gill

Well, I should have known better, our weather is now turning for the worse later today. Supposed to start a cold rain later and then drop about 40 degrees overnight. So, normal February weather, in other words, and no need for you to be envious! Your winter weather sounds much like ours, usually not too bad with occasional very cold snaps and sometimes snows. But like you, I seem to remember more snow as a child, seemed like we were very often sledding and skating around the ponds, now children have to make do with much less of that here. And we also had no decent cold-weather gear then, so often had to come in and stick our freezing feet on the woodstove. And then back out for more.

When I was told by my new doc I hadn't done enough Taxotere, she were treating me as if I had refused treatment. I told them it's all my MO had ordered for me, but they didn't know it until they checked. What I gathered from the whole ordeal was: they didn't read the chart before they talked to me, and if I would have been the other MO's patient I would have done more chemo, per her order, probably. The nurse came back and said it was okay, and I asked "which doc is right?" She said all docs have their own protocols. I wasn't real sure what to think at the time, I was just pretty sure I was fed up with taking chemo.

I hope you are not losing too much weight, you've been nauseous for a long time. Maybe the Norovirus hanging on? I am glad you're near the end of your sessions, perhaps they're giving you more of a break in routine than you anticipated. I think you should see the oncologist before each session too, or at least a nurse practitioner who is very familiar with your case.

Soon you will be done with this routine, we are always with you in spirit.

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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Feb 4, 2019 08:40AM Rosiecat wrote:

Hello again Mary,

I've just realised that you're still recovering from the 'crud' yourself - good name for it by the way. With any luck you'll have had your share until next Winter.

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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Feb 4, 2019 09:46AM flgi wrote:

Hello all,

Sorry to hear that Gill is still feeling nauseous; Mary has the “crud” and Sylvia and Raymond have also been struck down by some horrible winter bug.

I write from my bed, as my whole family also seem to have succumbed to some kind of flu, bar my husband (thankfully) who has been running up and down stairs with chicken soup, Ribena and Calpol all day! He’s recovering from a horrible migraine actually, but, as the “least” ill, has been nominated Chief Nurse- well done him!

Mary- many congratulations on reaching the 5 year milestone, definitely a very significant anniversary for Triple Negative patients. I hope you can breathe easier now.

Re: what Susie was saying re too much doom and gloom over TNBC, I suppose - as with everything- it is all relative.

Compared to most other breast cancer subtypes, the outcome for TNBC is generally less good. But let’s not forget that these other breast cancer subtypes now carry really excellent prognoses( think the five year survival for Stages 1-3 hormonal breast cancer is something like 93 percent).If the outcome for tnbc is,say, 15 percent less than that ( not exact figures and as ever all such figures are necessarily at least five years out of date) then TNBC might be seen as more doom and gloom-laden than other bcs, but actually in the grand scheme of cancers, the statistics are pretty good.

The one thing that is certain about BC is that it receives way more funding than other (particularly male) cancers. Since TNBC is currently viewed as the poor cousin of breast cancers ( inroads have not been made into treatment in the same way as they have for other bcs over the last twenty years) I sense that a large part of that funding is currently going into TNBC. So quite a lot of room for optimism there.

My mum is about to have her 9th paclitaxol ( all being well) tomorrow. She will then have a week off and the team will consider whether she can go up to 12.

The snow has now gone from Oxford, but at least we got our obligatory family album photos of snowmen and (rather reluctant) sledging!

Love to all

Flora x

IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
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Feb 4, 2019 12:45PM Rosiecat wrote:

Hello Flora,

What a sickly lot we are this week. Flu is just horrible, I wonder if that's what Sylvia and Raymond have? Your husband deserves a medal, taking on the role of Chief Nurse and just recovering from migraine. Thank Heaven's for Calpol, it does spare children an awful lot of misery.

From what I hear, there's about to be some interesting news regarding the treatment of TNBC. I wonder if Metaplastic triple negatives might benefit from this too? Oestrogen+ cancers are now treatable even at stage iv. More of a chronic condition, though I doubt if taking Tamoxifen or the alternative for 10 years is much fun. I really hope that within the next few years chemotherapy will no longer be needed to treat any type of breast cancer.

Your mum is coping well on weekly Paxlitaxel. I wish I'd been offered this. I was only offered three high dose treatments, though I have asked to have the next dose lowered. Our chemotherapy unit is absolutely full, so my having 12 weeks would probably have meant another patient being pushed down the waiting list. I really wish that I could have afforded private chemotherapy. Dr. H. at the Cancer Centre told me that it was horrendously expensive and the treatment was the same as NHS. I think he might have underestimated the dire circumstances some hospitals are in. Choices are very limited here and it all seems a bit haphazard in regard to the medication patients are offered in order to cope with side effects like nausea or Neutropenia - although I have finally been given Filgrastin injections for the Paxlitaxel treatments.

It was only last week that you were posting to say that your sinus problem had cleared and that you had a spring in your step again. I hope you'll be able to say the same thing again very soon.

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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Feb 4, 2019 01:57PM viewfinder wrote:

Happy Cancerversary Mary! So very happy for you!

Get well, Sylvia. Please take care. I had that cough and runny nose (like Niagara Falls) for two months. I was placed on two rounds of antibiotics and one of prednisone (I refused the second round). If it gets too serious, please see a doctor.


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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Feb 5, 2019 02:21AM flgi wrote:

Dear Gill,

I’m sorry you have had such a rotten time on Paclitaxol.

It is interesting you were only offered three high dose infusions-maybe, as you say, because it would mean keeping you out of the already-crowded chemo room at Norwich hospital? But hopefully also because the oncologist ( or maybe Dr H?)felt it was the best course for you with your type of breast cancer ie I do hope this decision was a considered one and one made with your best interests at heart!

If anyone out there reading this is considering private chemo in the UK, I thought it might be helpful to say what my mother’s taxane treatment has cost so far: £500 per infusion plus £250 for each lot of blood and liver tests, so, if she reaches 10, it will have cost her £7500.

Obviously we were forced to pay for it- it was the only way she could get the taxane- but some people might feel it a price worth paying for the private chemo experience?

The good things about going privately include: being able to choose what day you have the chemo on and the nurses being visibly less frantic( in fact not having quite enough to do, which has meant my mother has had very attentive treatment!) None of this is to say that she felt the nursing care she received through the NHS was sub-standard. She was just aware how crazily busy the nurses were...

Hope everyone is recovering from their various lurgies.

Flora x



IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
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Feb 5, 2019 07:09AM SusieW5 wrote:

Dear Flora,

Useful information about costs for private care. Thanks.

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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Feb 6, 2019 03:02AM Rosiecat wrote:

Hi Mary,

Not at all envious of your weather now. It's a lovely sunny Winter's morning here. Not too Cold and just a slight breeze. I'd love to go out for a walk around the village, but until I can shake of the Norovirus, I daren't wander far from the loo. I've lost 7 lbs so far. I'll soon put it back on no doubt.

I'd have enjoyed pond skating. We did have a fairly shallow stream in the park and would dare each other to run across it without falling through the ice and getting 'a foot full'. Inevitably, we would all end up with wet feet. I don't know if it's the same in America, but in the UK these days I doubt that many parents would allow their children out in the snow to play unless they could accompany them. Children miss out on so much, not least, learning to become independent. Social media is the new fun!

Different doctors do seem to have different treatment protocols and it's worrying when they differ wildly. The Dr. I had my second opinion from recommended aggressive treatment. My local hospital recommended no treatment at all. I do think that the hospital's massive debt might have influenced their decision though - much as it did in Flora's mum's case. You've seen your cancer off without needing more Taxotere and I can't help wondering if the docs are overdoing the chemotherapy. My oncology nurse told me that the first infusion of Paxlitaxel would have done most of the work. Perhaps the rest is just insurance ?

I now have an appointment with my oncologist tomorrow morning at 9.00 and the chemotherapy is at 9.30 so I'll be able to ask her opinion.

Still sunny here. I'm sure I must be wrong, but it looks as though Spring is on the way.

Keep warm and take good care of yourself.

Love,

Gill




Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Feb 6, 2019 06:09AM Rosiecat wrote:

Dear Flora,

Firstly, I hope you and the rest of the family are recovering well. So many viruses around this year. Sylvia and Raymond seem to have been particularly badly affected.

Dr. H. Advised the hospital that I needed aggressive treatment and my oncologist is following his plan. It's my reaction or over-reaction to Paxlitaxel that's the problem now. I'm having a blood test later this afternoon and this will determine whether further high doses are appropriate for me . Pleased that your mum's coping so well after all the physical problems she had earlier and then the worry you both had to endure when the Trust denied her the Paclitaxel she needed.

Including the cost of the Paxlitaxel infusions and blood tests will be a useful guide for those who are having a difficult time accessing treatment. All the same, it's a lot of money. It should be free to all NHS patients. Dr H. seemed very keen on that ideal. He said that TNBC was an aggressive cancer and chemotherapy was part of the treatment. He did say that I didn't need radiotherapy though. I'm guessing this may be down to the mastectomy, good margins (5mm) and remaining at grade two. Apparently most TNs and metaplastics are grade three. I'm grateful for that.

If only this Norovirus would give up and go away I'd feel well. It's so annoying.

Feels like a Spring day here. Apart from the coast, Norfolk's been so lucky with the weather. I'm looking forward to being out and about again, miss the walks and meeting up with the villagers.

Take care,

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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Feb 6, 2019 05:52PM maryna8 wrote:

Hi, Flora

That was annoying, I wrote a post to you then wasn't logged in when I tried to send it. Had to log in and lost the post, argh.

Too tired now to resend, will try again tomorrow. Hope you and family are feeling better!

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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Feb 6, 2019 11:42PM Jags56 wrote:

Dear Mary,

Congratulations on five years of being cancer free. This will surely give us motivation. I am fine and sometimes go through the thread . What a lot of knowledge you all have and discuss with each other.

Sylvia hope you and Raymond get well soon.

Best wishes to everyone .

Dx 6/27/2016, IDC, Left, 4cm, Stage IIB, Grade 3, 1/34 nodes, ER-/PR-, HER2- (IHC) Surgery 6/29/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 7/31/2016 Radiation Therapy 1/24/2017
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Feb 7, 2019 05:17AM maryna8 wrote:

Hi, Flora

I wanted to say thank you for congratulations, as a rule I don't like to even mention much about such things; I'm a bit superstitious and don't want to draw any attention. Laying low, so to speak, so the ill winds blow on by. But I couldn't help myself, and wanted to be happy about it.

It was interesting to read of your mother's experience and her treatment costs. I have no idea what my chemo treatments cost, and probably many people here don't know. The hospital or clinic here will bill the insurance company, or companies, and then they negotiate downward, and what the final bill is is never what the first price was. I'm glad your mother was pleased with the care she received, I'm sure it was good to have nurses that took their time with her and didn't rush.

I do hope you and family are recovering from your various bugs, and thank goodness your husband was able to nurse everyone. I do hope he doesn't fall ill too.

When my sis-in-law and I were in Alaska last year, we were on the balcony of an apparently-famous treehouse overlooking a magnificent vista when 3 men joined us in our viewing. They turned out to be Australian, a father and 2 sons. One of the sons was in college, the other was a doctor. He was a research doctor working in the UK, his field of study was Triple-Negative Breast Cancer and he wondered if we had heard of that. He was quite surprised when I told him I had been treated for it, and he told us there is a lot of ongoing work on this disease with progress really coming along. He asked how long I had it, and said from what he has seen my chances of long-term survival were good since I was already over 4 years then. I will take any encouragement! Your theory of relativity re: TNBC is a good way to look at it. Worse prognosis than some of the other BCs, but better than some of the other cancers. The biggest cancer killer is actually lung cancer, and it is very sneaky, and late to make itself known.

Get better 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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Feb 7, 2019 05:21AM maryna8 wrote:

Hi, Jags

It's good to see you here again, thanks for congratulations.

I'm glad you are doing so well, and have recovered from all the treatments. Yes, we miss Sylvia's presence here, I'm sure she will be back when she recovers, and I do hope that's soon!

Come back when you can, it's good to see old friends, and you can tell us a little about your life in India if you like.

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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Feb 7, 2019 08:19AM maryna8 wrote:

HI Gill

I will start with a weather report for our area today, included in our forecast is rain, ice, high winds, and dropping temps. All of it, at different times. Right now we are still in the warmer part of the area so are being spared the ice storms to our west and north. But are still being cautioned.

As to our childhood ice skating, we didn't actually have skates, (that cost money!) We would slide around on our slick boots and call it skating. I agree that children now are watched over more carefully, and don't have nearly as much freedom to run outside and play as we did. This era of "stranger danger" is very sad, I think.

It must have been awful to think that you would be told you would not get treatment only because of cost. That is not right. It makes one wonder, if you read my post to Flora where I mentioned the young research doc who is looking for cures for TNBC in the UK, it would be a sad irony indeed if they found something new and then hospitals couldn't afford to offer it!

I'm very glad you saw your oncologist today, I look forward to hearing what he has to say.

I got some bad news this week. My shoulder has been hurting more, my MO ordered an MRI and my rotator cuff is now fully torn. I guess I will have to bite the bullet and have surgery on it, ugh.

I will talk to you 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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Feb 7, 2019 11:43AM Rosiecat wrote:

Hi Mary,

Sorry about the weather over there. In Norfolk it's wet and very windy. No ice and warmer than our average February weather. Spring is not on the way just yet then.

Skating in boots sound a whole lot safer than ice skates. A friend and her father once took me to a large ice rink in Nottingham quite close to my home city of Leicester - in the East Midlands. I spent most of the time clinging onto the barrier at the side of the rink just trying to keep upright. When I did venture onto the rink, I managed to skate a couple of metres before gracefully falling over. Couldn't manage to stand up by myself, fortunately someone skated up to me and helped me back onto my feet. I didn't repeat the experience.

The hospital didn't mention the costs to me I was simply refused further treatment by the Surgeon A Surgeon is not an oncologist and everyone should see an oncologist before decisions are made. Standard treatment for TNBC is surgery followed by chemotherapy. Under English law, hospitals built by PFI have an absolute duty to pay off the PFI loan before paying for anything else and this has meant cutbacks and it shows. Perhaps not as shocking as Flora's mum being told halfway through her treatment that the hospital had run out of money and if she wanted treatment, she would have to pay for it herself. I think that's immoral and probably illegal. It's very clear that the Government wants to break the NHS and push for privatisation. Many services have been handed over to the private sector already. Most have failed spectacularly.Tests held up for months, body parts not disposed of, the list goes on. We have no-one in the UK who is capable of leadership. This Government is probably the worst I've experienced. We have become the laughing stock of Europe.

I did read your post to Flora.TNBC research has really come under the spotlight recently. As you say, it would be ironic if the cure was too expensive to buy. I seem to remember that Herceptin was considered too expensive at first.

I didn't get to see my oncologist today. I'd misunderstood. My pre chemotherapy assessment was done by an oncology Registrar. He was excellent, spent a lot of time with me and answered all my questions. My oncologist wanted me to have the full dose of Paxlitaxel, as did Dr. H at the London Cancer Centre. Metaplastic is so aggressive that it needs to be hit hard. Actually it's a relief to have the decision made for me. I only have one treatment left now so don't really want to cut any corners if I can avoid it.

The Registrar told me that my test came back negative for Norovirus. It's actually a very persistent infection that hasn't responded to the antibiotics. Michael is still not over the same infection. It's definitely on the way out though. Hope the chemotherapy hasn't done anything to put the recovery back.

You shoulder must be extremely painful. Guess you only have one choice left. I'm always amazed at how good anaesthetics are these days. Also the miracle of waking up after surgery without pain. Even small operations used to be so painful. Like you, I don't take surgery lightly and I certainly don't make a good patient. Get it over with soon and then you'll be free to enjoy the warmer weather. You always sound so active and energetic and the pain will start to hold you back. You've been through so much worse after all.

I'll light a candle for you as you did for me.

Take care of yourself.

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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Feb 10, 2019 03:36AM sylviaexmouthuk wrote:

Hello Mary, Gill, Susie, Flora, viewfinder, Helenlouise, Jags 56, Hanieh,

Thank you all for your kind words and for keeping the thread ticking over.

Flora, I do hope you and your family are feeling better. It is now two weeks that this awful bug started with Raymond and me and we are still very much below par and have a hacking cough.

This is so very much not Raymond and me. We have been doing a lot of lying down and sleeping. Raymond did manage to see the GP and was told that he had a viral infection. I felt too unwell to go to the GPs surgery. The GP gave Raymond two bottles of strong linctus for bot of us.

Another doctor at the surgery did a phone appointment and insisted that what we have is a bacterial infection and that we needed antibiotics. Our own doctor said the opposite! She did take a swab from Raymond and it came back viral infection.

We have been told that it could take weeks to clear.

Sending best wishes to all of you.

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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Feb 10, 2019 06:41AM maryna8 wrote:

Hi, Sylvia

Glad to see you well enough to feel like posting. How awful to have such a bad bug. I do know how you feel, last February I was out almost the whole month with flu, once the worst of symptoms passed I was left very weak and tired. Raymond deserves kudos for rousing himself enough to get out, and find some information for you both. I do not know what "strong linctus" is, but I hope it helps.

Here it seems some of us have been not faring too well health-wise, with Norovius for Gill, sinus infections/problems for Flora and I, and so on. The Australian contingent is coping with dust storms and high heat and drought. I went back to the doctor Friday and had an injection he gives, which contains some steroid and a mystery ingredient, it gives a feeling of energy and does dry up the head somewhat, which cuts down on sinus drainage. I remember that last February I did the same and got through that month with his help.

This morning here we wake up with a thick glaze of ice over everything. I went out to feed the birds but first had to throw down some ice-melt product on the bit of concrete I have to walk on to get there. Absolutely glassy out there! Not a car moving on the road.

I suppose it's a good day to catch up on things here, and I am so glad to hear from you!

It's definitely not the same here without you. I do wish that Jags would post back and tell us a little about India, and the state of healthcare there, and what is the weather like?

I will talk to you later, Sylvia. Take care and keep resting, spring can't be far away!

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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Feb 10, 2019 02:02PM SusieW5 wrote:

Evening all,

Sorry, just been watching Endeavour.

Six months today since my last chemo cycle and the hair still has a long way to go. Nails completely back to normal, though.

Hope everyone gets over their dreaded lurgis soon.

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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Feb 10, 2019 03:42PM - edited Feb 10, 2019 03:58PM by viewfinder

Silvia, I pray your husband and you continue to heal. This cold and hacking cough that's going around is nasty. As I mentioned, mine lasted two months. Hope yours doesn't. Continue to lay down and sleep. Both of you need as much rest as you can get!

Mary, there are several words that they use in this thread like linctus. I didn't know what it was, so I

1- highlighted the word right in the post

2- right-clicked the word while highlighted, then

3- selected "Search for linctus" from the drop down menu.

It opens a new window with information about the word. I use the Chrome Browser but the feature is probably available in other browsers. Give it a try as it's very handy way to search when reading something on the web.

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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Feb 10, 2019 07:45PM Kathseward wrote:

hi everyone

Hope u are all well? Getting cooler here. But concerned about a long standing under active thyroid I have. Been on thyroxine for many years and had my bloods done for the first time in a couple of years which were mildly elevated. Have always had a tickling cough on and off for years because of it but seems to be a bit worse on one side! Has taken me to a very dark place!!!! I know I’ve been taking thyroxine at the same time as magnesium since the elevated level and I’ve read that magnesium can counteract the effect of thyroxine. Dosage increased and magnesium stopped to see if it makes a difference but really scared

Cheers

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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Feb 11, 2019 01:56AM flgi wrote:

Dear all,

Sylvia, very nice to hear from you but so sorry to hear you're still under the weather .

Do take care of yourself and ring the GP if you feel at all concerned. I can't remember if you've had the flu jab this year, although vaguely remember that one year it made your lymphadaema flare up- so I imagine you're not that keen on it.

None of us had it, which I regret. We all (apart from my husband, Jez) caught flu in rapid succession, starting with the littlest 10 days' ago. All the children have been off school since then but have finally gone back today! Hurray!

So it's been quite a week! I've now got a chest infection and asthma-type symptoms so am on ABs and an inhaler. Still bed-bound too. But am enjoying reading all my old children's books: the Lorna Hill series; Heidi; A Traveller in Time by Allison Uttley. Do any of you remember those? Or did you read them to your children or nephews and nieces? I have been quite transported into alternate universes, which has helped me feel a little less lousy.

Mary, I'm sorry you're still sinus-ey and having pain in your shoulder. And, Kath, sorry you're having your thyroid investigated again.

Illness of whatever kind ( even when we know it's unlikely to be serious and will pass) can take us to a dark place, can't it, Kath? And of course all the more so for you guys who have had something very serious.

For example, I've been terribly worried and tearful about my youngest, Toby, this week because his temperature stayed high for 9 days, and this has never happened before. It has finally come down- phew!

I've also had many panicked moments since my chest infection started. The combination of not being able to breathe well through nose( thanks to sinusitis)or mouth -and the sleeplessness that comes with it-led to a series of small panic attacks, where I felt I was going to pass out, plus three increasingly crazed calls to GPs/111!! It is hard when all the doctors are saying it is not an emergency,one's rational self knows it's not an emergency but it still FEELS like an emergency!

I was quite surprised that the doctors gave me ABs so readily as soon as they heard the crackle in my lungs. I know that chest infections are sometimes viral in origin, and thought doctors at least have to test the sputum these days to see whether ABs are necessary?

I guess that, as with so many medical decisions, it is a fine balancing act- doctors do not want chest infections becoming pneumonia, and if this means a few unnecessary sets of antibiotics along the way, this is probably a price worth paying. Plus it is a crazily busy time of year and they have to make quick decisions.What a job they have .....

Susie, great that you're now 6 months post-chemo. Has the time flown?

The sun is out today, and our territorial robin seems to be making its presence felt just outside my bedroom window. Watching the birds is such helpful thing when “convalescing" I find. Their funny, energetic movements really lift the spirits.

I wish you all uncomplicated recoveries.

Love

Flora x

IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
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Feb 11, 2019 04:39AM SusieW5 wrote:

Hello, Flora,

Yes, I suppose the time has gone by quickly. 6 months since chemo. 3.5 since radiotherapy finished. All seems a bit like a bad dream now.

I had the flu jab as I do every year, being asthmatic. Sorry you're feeling ill. Looks like the weather's bucking up a bit too. I shall head down to Kew Gardens this afternoon to visit the annual orchid festival. I wonder if the little green lizard who lives in the Princess of Wales conservatory will be out and about greeting visitors.


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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Feb 11, 2019 11:31AM sylviaexmouthuk wrote:

Hello everyone,

I am posting to say that I shall not be posting any more on the thread. I shall read posts for a little while until those in our group have finished treatment but after more than eight years of devoting myself to this I need to take a long break.

I am feeling very under the weather, tired and exhausted and I need some time for myself.

Sending love and best wishes to you all.

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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Feb 11, 2019 11:57AM - edited Feb 11, 2019 12:06PM by Kathseward

much love Sylvia. Stay well. Just have to say u are an amazing woman with a very gentle heart. Take it easy and enjoy ur well earned rest. Also did they test u for Pertussis (whooping cough)? We routinely test for it if cough lasted longer than 2 weeks in adults in ur age group as adults don't whoop. The cough is there for up to 3 months. Also community aquired pneumonia or a pneumococcal strain is comfy within ur age group . Have u had a pneumococcal vaccine or cxr? PM me if u want to discuss ? Happy to give any guidance I can

Cheers

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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Feb 11, 2019 02:24PM maryna8 wrote:

Dear Sylvia,

I was surprised by your post, and I am worried about you more now. Kath has a good point, you could have something else than you think. Just because Raymond has a viral infection doesn't mean yours is a viral infection, but you know that.

I want you to have all the rest and care you need, dear friend, and I want to run to your house and take care of you.

Thinking of you, and I love you.

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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Feb 11, 2019 04:37PM viewfinder wrote:

Dear Sylvia,

On one level, I am very sorry to hear that you will no longer be posting in this thread, the one you started eight years ago. On another and most important level, I agree that it's the right decision. You need to rest and take care of yourself.

Though I haven't participated in this thread for a very long time, I want to thank you for all you've done to help me understand what my sister will be going through. Your love and dedication to helping others showed through every word you wrote. I so appreciate your help, and the help others have given me as well.

I wish your husband and you well! God bless you!

xxx

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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