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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 01:43PM - edited Aug 20, 2019 01:05PM 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 02 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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Jun 7, 2019 11:17PM - edited Jun 7, 2019 11:19PM by maryna8

This Post was deleted by maryna8.
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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Jun 8, 2019 12:07PM Rosiecat wrote:

Hi Mary,

I do exactly what you do, read Chris Woolams' newsletter and then go off into my own little world of research. Also like you, I sometimes don't like what I find there. I've always thought that once a patient with TNBC had been out for 5 years, the chance of recurrence was extremely low. I'm going to consider that to be the case for metaplastic TNBC too. Who knows what science will come up with in the meantime?

I haven't experienced a real deluge for years. When I did, the meandering stream in our garden quickly became a raging torrent, sweeping away anything in its path. I used to listen to it during the night, praying that the house wouldn't be flooded by morning - it wasn't! However, our village is very marshy in places and some of our garden is marshland, so we have to keep ditches and the Marsh pond clear at all times. It's an idyllic place to live, with plenty of wildlife. Ducks, grass snakes, frogs and, huge, not so welcome, slugs enjoy the wet side of the garden. We're not on mains water and use a pump and filter system to bring our water to the house - all chemical free. I would think that you have a similar system on the farm?

Hope your friend with kidney cancer confounds the docs once again.

No outdoor excitement for me this weekend, just sitting here watching the constant drizzle and wondering if I should do some ironing, read a book, or watch sport on TV. I should really get stuck into the housework, but as my school reports always said 'this girl is easily distracted'.

Take care.

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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Jun 8, 2019 04:10PM Rosiecat wrote:

Hi Susie,

I was wondering where you were. Hope all's well and you're enjoying a London Spring. A lot's been happening down there in the last week - Donald Trump's visit, D day celebrations, Trooping the Colour, Gove coming out as a crackhead and last but definitely least, Boris Johnson's charm offensive.

My understanding of TNBC is that after 5 years in the clear you're out, unlike hormone + patients. The whole thing seems a bit like a bad dream to me now that I've seen off the C. diff side effects. Still tired, but hair back, eyebrows back, eyelashes back, weight back, oily skin back and spots back, hurray!

What I really need to know is can I have a glass of wine now and then? I thought you might be up to speed on this. 😉

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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Jun 8, 2019 04:47PM sylviaexmouthuk wrote:

Hello Mary,

I do hope you recovered from that swelling in your ankle.

I have now read through the Cancer Active/Chris Woollams article entitled Triple negative breast cancer overview, causes and treatments. On the whole I found it very interesting and thorough. In all of these articles, whether they are from Chris Woollams or other sources, you have to make up your own mind about what you want to believe and what you do not want to believe. Whatever I read I do not take too much notice of percentages etc. As I have said before, I do not believe there is a cure for any breast cancer, just NED. My consultants said the same. What we can say is that there are no orthodox treatments by way of medication after the standard treatment of surgery, chemotherapy and/or radiotherapy, unlike hormonal breast cancer where you can have years and years of tamoxifen and/or aromatase inhibitors with all their side effects and Herceptin if you are HER2+. I think the big drug companies are anxious to find medication for TNBC because that is a good income for them. If there is a cure for other breast cancers, but not TNBC, then why are the researchers and scientists always talking about a cure for breast cancer and searching for it all the time. If patients with NED tell themselves they are cured, and it gives them peace of mind, so be it. I think you have to take good care of your lifestyle and hope it will keep metastases at bay. Prevention is the easiest way to deal with trying to keep cancer at bay, but there are no guarantees. I have always said that I am glad I do not have to take medication and have always had a positive attitude to being triple negative.

I see that Chris Woollams will celebrate his seventieth birthday on July 4th and will be taking a bit of a break from his Personal Prescriptions.

Yes, 5Fu is flourouracil. It is used here quite a bit, but is not standard. I do not know why it is given to some and not to others, but we have to remember that the chemotherapy drugs act in different ways and that is why we have these regimens. The drugs epirubicin or doxorubicin, with cyclophosphamide, and then a taxane drug, seem to be fairly standard, but doxorubicin is also something that I think dates back to the fifties. The oncologist will decide what is best suited to each patient. As you say, these chemotherapy drugs are not meant to be cures. My own oncologist described them as palliative. As you say, they are so toxic they can be devastating.

I think we all have to remember that we are not doctors and that we can only speak from what we read and, above all, from our own experiences.

I do agree with you that vitamin D is very important and that we do need supplements if we cannot get enough sun. I have no idea how much of the vitamin D from supplements is actually absorbed.

We actually had a lot of rain yesterday but the rain promised today has not come.

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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Jun 8, 2019 04:55PM sylviaexmouthuk wrote:

Hello Gill,

I think that we can be sure that cancer treatment is not really up to par under the NHS. There is too much waiting at every stage. We cannot blame the staff, they are overwhelmed. There is too much demand for treatment and not enough staff to cope with it. I cannot see how it is going to improve. I had good treatment but that was nearly fourteen years ago and I think things have changed since then.

That is about all for today.

Keep well.

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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Jun 8, 2019 05:25PM SusieW5 wrote:

Hi Gill,

Glad to hear that you're on the mend. I don't know what the advice is about wine but I have some waiting for me downstairs with my dinner.

I'm just back from a week in the Peak District. Such lovely scenery!


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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Jun 11, 2019 12:16PM Rosiecat wrote:

Hello Sylvia,

I wonder if it has finally rained in Exmouth? We've certainly had more than our fair share in South Norfolk, we even managed a thunder storm last night.

I had an appointment with my GP yesterday afternoon to discuss the intermittent rib pain I've been having. As it comes and goes rather than being constant and didn't respond to pressure during her examination, she doubts if it's anything to worry about, but asked if I wanted a bone scan to put my mind at rest. I don't think I do really, but it's now in my notes and I only need to telephone if I change my mind.

I'll need to ask my surgeon about an ultrasound on my mastectomy side. I see him on September 13th. Ultrasound scans are no longer undertaken routinely it seems. I'm not too concerned as a lump would be very easy to feel and I do check along the scarline regularly.

My GP spent quite a long time with me, and wanted to know all about the chemotherapy and how I was feeling both physically and mentally. I'm very fortunate to have such caring doctor. The waiting time for an appointment is horrendous though.

The thread is very quiet at the moment.

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 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jun 11, 2019 12:23PM Rosiecat wrote:

Hi Susie,

The Peak District has some very dramatic scenery. We used to go quite often when the children were younger as both enjoyed cycling along the safe cycle paths. Then they became teenagers.........

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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Jun 11, 2019 02:34PM maryna8 wrote:

Hi Gill,

Your homeplace does sound idyllic, what with the marshes and meandering stream and animals. I also do have a water well, it was drilled down through the rock, here we are very hilly and rocky. At the bottom of the hill below the farmhouse there is a stream and a pond and there are definitely lots of animals!

Our chances of recurrence after 5-years survival are better than they were, I don't know what the percentages are but that's okay. We'll take it and run with it! My sis-in-law and I were talking and we realized just how many people we know who have cancer of all different kinds, it's getting ridiculous. She and I are going tomorrow to California for a week, and it looks as though my friend with kidney cancer may die while we are gone. He is home with his family and hospice care.

I can always be distracted from housework, my least favorite thing to do.

My sis-in-law and I are heading to California for 5 days, I am looking forward to getting away. I have been staying home intentionally for these last many months trying to heal my shoulder and keep up with therapy. I still am not allowed to wrangle a heavy suitcase, so will have to pack light.

I'll talk to you 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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Jun 11, 2019 02:46PM helenlouise wrote:

A quick update:

I am awaiting phone call to head to one of our large cancer centers in Melbourne Australia called Peter MAC (about three hours south by car). I have been referred to a doctor Sherene Loi which runs Breast cancer trials to see if there are any options I might be eligible for.

Still have the vacuum dressing (aka the farty box) for at least another two weeks. Whilst the wound has healed by half the surgeon is worried it will regress if the dressing is removed too soon. I’m all good for anything that can help me heal, even if it makes embarrassing sounds, regularly!

My MO has put me on leave - no work - no additional stress. So I am good with that as exhaustion was becoming a problem. So in a holding pattern for now.

I hope everyone is doing well or as well as you can be if in treatment. I still cruise the posts and read lots of interesting and useful information, as well as lots of inspiring women, BC stories and a wealth of camaraderie.

Best wishes one and all - Helen xx
2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/28/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Jun 11, 2019 03:43PM sylviaexmouthuk wrote:

Hello Gill,

It was nice to hear from you, especially as the thread has been very quiet lately for posts. There are always a lot of views.

We have finally had lots of rain. It seems as if it is all or nothing. We had a lot of rain yesterday and some thunder and lightning. I am hoping it will be better tomorrow when the gardeners are due to cut the lawns and do various other jobs.

I was glad to know that you have a caring doctor. What kind of bone scan would you be having to check out the intermittent rib pain? If it is a bone nuclide scan, it involves injecting a radioactive substance into the blood and you are radioactive for a couple of days. I had two in the past, one before I started treatment and one after finishing. I think the first one was to see if I had any spread to the bones and the second one was to make sure all was clear after I had finished treatment.

The other scan is the bone density scan (DEXA) to look for osteopenia or osteoporosis as cancer treatment can cause bone problems.

I do hope all will go well on September 13th when you see your consultant surgeon. When I was going through all this, you could have a mammogram every three years and you only had an ultrasound if there was anything suspicious.

It is good that you do your own physical check to see if anything feels abnormal.

It was good that your GP spent a long time with you and took an interest in your chemotherapy treatment and how you were feeling both physically and mentally.

As for waiting for an appointment, it is the same here in Exmouth, especially if you want to see your own GP. There are more and more offers of telephone and on line appointments, but I always insist on seeing my own doctor, so often have to wait.

I have been reading through the latest edition of What Doctors Don't Tell You (June). There is so much in it that it takes quite a while to read. One article that I found quite interesting was the Politics of Health – by Rob Verkerk, A long engagement – why being engaged – with your health – is vital for a long life (Someone who is 'engaged' in their healthcare throughout their life – proactive instead of reactive – fares much better).

Another article of interest was Heart disease: the insulin connection. Holistic cardiologists say 90% of heart attacks do not have to happen. As Celeste McGovern discovers, heart disease is not caused by high cholesterol but inflammation and insulin resistance.

I liked the various headings for healthy eating in this article.

Eat real:

Eat more vegetables and berries.

Ditch sugar, especially the processed kind.

Eliminate all processed foods.

Eat a handful of fresh nuts every day.

Fast:

Some kind of fasting is advised.

24 hour fasting

Only eating within an 8 hour window everyday (intermittent fasting)

Fasting may improve the way your body metabolises sugar, which reduces insulin resistance.

That is about all for now.

If you can think of anything you would like to discuss on the thread, please let us all know.

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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Jun 11, 2019 03:46PM sylviaexmouthuk wrote:

Hello Mary,

I am just popping in to say that I do hope you have a nice time in California with your sister-in-law for five days. I think you have earned it.

My friend here flew off to California yesterday to visit her son.

Enjoy your 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 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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Jun 11, 2019 03:52PM sylviaexmouthuk wrote:

Hello Helen,

Thank you for your latest post. I do hope you have some good luck at that cancer centre. That is a long drive.

I do hope that your wound will soon be completely healed. It has been such a long ordeal for you.

I was so glad to know that you are on leave from work so that you have no additional stress. You have enough stress coping with what you are going through.

I was glad to know that you do get some benefit and comfort from the thread.

Please let us know how you get on.

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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Jun 11, 2019 04:24PM Rosiecat wrote:

Hi Mary,

I'm beginning to think of cancer as the modern equivalent of plague. I seem to have an awful lot of friends with it too. They're all a little older than me though. Growing older is certainly risky, but beats the alternative I suppose. However, we're only in out sixties, so very much in our prime.

I think we're both greatly blessed with where we live. The wildlife is frustrating at times, but there's a chance that I might get my own back post brexit when no one wants to trade with us any more. Rabbit pie and braised venison for supper anyone?

Anyway, this is just a quick note to wish you a very happy holiday in sunny California - I'm writing with fingers and toes crossed, hoping that you'll be leaving the rain at home.

Have fun!

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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Jun 11, 2019 07:25PM - edited Jun 11, 2019 07:26PM by SusieW5

I went to the physio yesterday (pain in my heel). I knew that his mother and mother-in-law had both had BC but have now discovered that both his receptionists have had it.

Is it him? Is he Typhoid Greg?

Half of us will have cancer of some type. BC is one of the better ones. My husband died of oesophageal cancer. You really don't want 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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Jun 12, 2019 11:40AM Rosiecat wrote:

Hi Susie,

Oesophageal cancer is one of the very bad ones, I agree. For me, you could add pancreatic, head and neck and stomach cancer to the most dreaded list. There are so many different breast cancer types and some are a lot worse than others.

Watching your husband die from such a vicious, painful cancer must have been an appalling experience. I'm so sorry you both had to go through this.

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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Jun 12, 2019 01:45PM maryna8 wrote:

Hi, Sylvia

My ankle has recovered, but I still do have a slight swelling on top of my foot. Right on the area where I had bunion surgery years ago, all brought about by standing on concrete too long in hot weather in the wrong shoes. Another one of those things that only came about after chemotherapy and neuropathy, not to forget varicose veins.

Getting older is more expensive; I just finished checking on my flight to California and paying extra for aisle seats so I can stretch my legs during the flight, and get up when I want to without crawling over people. Very necessary to keep ankles from swelling during flight, I will also have to pick up some kind of snack so as to avoid the salty pretzels, peanuts and chips that are handed out.

I find I agree with you down the line on your opinion of TNBC and its' progression. We live as we think is best and hope for the best, and that is about all we can do. It does get easier to handle this way of living, and I suppose everyone alive has the Sword of Damocles hanging over their heads always. My friend with the long-term kidney cancer did pass away yesterday, he was my age and I am sorry to miss the funeral. I would like to be there to support his family, they are very close and have already lost one family member this year.

Happy birthday to Chris Woollams and I wonder how Marias is doing this week? Helenlouise is certainly having a time of it, I hope she gets some good news.

I received my issue of WDDTY yesterday, I think I will take it along on my trip. I haven't had time to look at it.

I am a little concerned about this trip vis-a-vis my shoulder, I will have to take along my pulleys, elastic bands, 1 lb. weight, plastic bags for icepacks. I am still limited in what I can do, and will have to be careful with luggage. I am looking forward to getting away however, and can only hope nothing happens to anyone here while I am gone! The last 3 trips of mine have been occasions when people dear to me had accidents or worse.

I will actually be gone 6 nights since tonight we will be staying in the city where the airport is, since we have an early flight. There is an airport only an hour away, but it's very small and whenever we use it and get our connecting flights home there are many delays, it's quicker to drive twice as far and use the big airport.

I'll 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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Jun 13, 2019 12:30PM Rosiecat wrote:

Hello Sylvia,

It would be the bone nuclide scan my GP had in mind, as I was concerned about the possibility of a spread of cancer to the rib cage. The offer will remain on my record, but I won't be going ahead unless the discomfort increases or becomes more permanent. I do have some cording, despite doing the recommended exercises, though nothing that impacts on movement or flexibility. However I do wonder if the stretching might cause referred pain under the ribs.

As for osteoporosis, I've decided to have the Zometa infusion in July, this will be my second dose. The consultant at the London Cancer Centre was keen for me to have Zometa both to help prevent the cancer from spreading to the bones and to harden my bones following chemotherapy. I also take a vitamin D supplement and get out into the garden at every opportunity - not that there's been much sunshine in South Norfolk this week. I could always ask for a DEXA scan if I have any concerns.

I've been fairly proactive with my health for many years. I'm not sure about 24 hour fasting, but do usually eat within an 8 or 9 hour window. I tried fasting before chemotherapy, but felt nauseated long before the 24 hours were up. The eating advice you listed in your last post to me is sensible and very much in line with NHS guidance on eating for people who either have diabetes, or are borderline. Michael has been diagnosed with type 2 diabetes very recently, but both parents and his uncle were diabetic, so it was almost inevitable. Genetics play a huge part in our health, but I firmly believe that we can fight back with a healthy diet and exercise.

I'll give future topics for discussion some thought. This thread throws up some very useful information on diagnosis, treatment and side effects as it is. I'm always interested in what those who contribute to the thread are up to, though sometimes the news isn't good. What really amazes me is the good humour, even during difficult times.

Hope it was dry enough for your lawns to be cut. Our grass is far too wet - very green though.

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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Jun 13, 2019 08:39PM Rosiecat wrote:

Hello Helen,

I was interested to hear that you're off to Melbourne to see if you could be eligible for a trial. It's a long journey, but if a trial is suitable for you the treatment would probably be given at your local cancer centre. Good luck.

I'm so pleased that your wound is finally healing, even if the vacuum dressing is making embarrassing noises. Hope everyone around you has a sense of humour.

Let us know how the Melbourne visit goes.

With my very best wishes,

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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Jun 14, 2019 02:40PM Rosiecat wrote:

Hello everyone,

I see that the National Health Service is falling further behind in cancer diagnosis and treatment. Not just the Norfolk and Norwich hospital then. I was seen at the hospital cancer clinic 15 days after reporting my lump to a GP at my local surgery. I was given a mammogram and an ultrasound at the clinic and was diagnosed immediately. I was given a guided core biopsy straight away. It took one week for an appointment with my breast surgeon and for the the initial pathology report to arrive. My full report with HER 2 status arrived one week after that. The date for my surgery was set right on the 62 day NHS target time. However, surgery on the date cannot be guaranteed as the hospital has higher than the national average number of cancellations. I paid for my mastectomy just for peace of mind. I'm not proud of myself for queue jumping, quite the opposite in fact. I was just too frightened to risk waiting.

The physical and psychological damage done to cancer patients who face long waits cannot be quantified. Many cancers are slow growing, but others grow and spread rapidly. In a wealthy country like ours I have no idea why this is being allowed to happen. The NHS is the best thing that ever happened to the United Kingdom.

Well, that was grim! On a happier note, I hope you all have the opportunity to make a few happy memories this weekend. Mary, I Hope you're giving California a run for it's money 🥂🍾

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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Jun 14, 2019 05:09PM sylviaexmouthuk wrote:

Hello Mary,

I do hope all will be back to normal soon with your foot. It seems that there are so many after effects of chemotherapy that we have to learn to live with.

I do agree that getting older is more expensive in many ways. Raymond and I seem to be paying out quite a bit with our dental visits, as well as the podiatrist, not to mention various toiletries and supplements from Holland and Barrett or on-line. We try to get the purest things available and organic.

It is quite frightening watching the increasing numbers of people getting some sort of cancer. It seems to be everywhere around me.

I shall be thinking of Chris Woollams for his 70th birthday on July 4th. I have followed him ever since diagnosis when I picked up a copy of icon magazine at the hospital on my first visit for a definite diagnosis, mammogram, ultrasound and biopsy. That magazine was my guiding light. It does not seem to be around much any more. His on line information seems to spread wider and wider. Have you ever been on his forum on Facebook? I have not, mainly because I do not want to be involved with Facebook.

Marias has vanished again and I do hope all is improving with her. I fear that Hanieh has disappeared for good and I do hope she and her family are fine. I do hope we are not going to get into more wars again.

You know that I always welcome your comments about WDDTY.

I do hope you will enjoy your break in California.

It is not at all like June weather here and we have now had too much rain!

Brexit groans on and we are going through the tedious journey for the election of a new Conservative leader and therefore Prime Minister. I think we should just have a General Election and get in some new people, as our present Parliament is not much good.

That is about all for now. It has been a busy week and I am hoping for a relaxing weekend.

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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Jun 14, 2019 05:30PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post. I do hope the discomfort that you have will gradually decrease and that you will be able to avoid a bone nuclide scan.

The other scan, a bone density scan (DEXA) I think all breast cancer patients should have before and after treatment. It is good to know what the state of your bones was before treatment and what it is after treatment, so that you know what damage it has caused.

I do hope all goes well with your Zometa (zoledronic acid) infusion in July. It is not something I have ever wanted to have. I was offered Fosamax (alendronic acid) for my chemotherapy induced induced osteoporosis, but refused to have it because of the harmful side effects. I get my calcium from the food I eat and take 4,000 IUs of vitamin D and 100 mg of magnesium. I also try to keep active.

I was sorry to read that Michael has recently been diagnosed with type 2 diabetes. It is a nasty disease but it can be controlled through an anti-diabetic diet. Dr Mosley did programmes about this on the television and has written books. He reversed his own type 2 diabetes.

It is true that the thread has a lot of information on it and we do talk about so many different things. I do love the friendliness and the sense of humour. Susie has a great sense of humour and can always make me chuckle.

The lawns did get cut and we were very lucky. It looks as though there is more rain for the weekend. It has brought a lot of plants into bloom.

I do hope you have a good weekend.

Regards to Michael.

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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Jun 14, 2019 05:40PM sylviaexmouthuk wrote:

Hello Gill,

I have just seen your latest post and I do agree with everything you said about what is happening with our NHS. The creation of the NHS was definitely the best thing that ever happened to this country and I think the 1945 Government was the best one we have ever had. The powers-that-be are systematically undoing everything and privatisation is the name of the game. I fear that Donald Trump has his eyes on our NHS.

It is true that we are a rich country, but the wealth has not trickled down to the population at large. The wealth is owned by 1% and they could not care less about the 99%! They talk about equality and fairness but that is as far as it goes. There is a let them eat cake attitude among the wealthy and it makes me sick. I do hope that Boris Johnson will not be the next Prime Minister and I do not think much of any of that merry group of men up for leadership. I noticed that they have made sure that the two women are out.

Thank you for your great input on the thread. It amazes me that you have sprung back so well after all that you have been through.

Have a good weekend.

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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Jun 14, 2019 05:43PM sylviaexmouthuk wrote:

Hello everyone,

I just wanted to send best wishes to everyone who has been posting and viewing.

Best wishes to Val, Viewfinder, adagio, 53Nancy, Susie, Flo, Marias, Hanieh, Helenlouise, Kath and Jags56, and many thanks to Mary and Gill for their effort on the thread this week.

Relax and enjoy.

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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Jun 17, 2019 02:12PM Rosiecat wrote:

Hello Sylvia,

Hope you had a relaxing weekend. I wish the weather would sort itself out, it's supposed to be June. We shouldn't complain too much when parts of Lincolnshire are flooded and many people homeless. I cannot imagine what it must be like to go back to a soaking wet house full of mud and ruined furniture.

I'm rather surprised by how quickly I've sprung back myself. Whilst chemotherapy made me extremely ill and the C.difficile infection whithout the white cells to fight it was very dangerous, I've actually been left with very few side effects. Those I do have, like 'chemo brain' and loss of taste are probably only temporary. The tiredness will wear off over the next few months. Peripheral neuropathy and lymphoedema were the conditions I dreaded most as they can be so hard to cope with.Not only did I avoid the worst, I didn't even lose a single fingernail or toenail.

Like you, I also fear that Donald Trump has his eyes on our NHS. He and Johnson are far too close for my liking. I think that many of us would fight tooth and nail to keep the NHS free, it's just too important to hand over to the disgustingly wealthy without a fight. I sometimes think that the UK is heading towards a revolution.

Michael has been put on an anti-diabetic diet, but will look at what Michael Mosley has to say, as he managed to reverse his type 2 diabetes. Michael is at an early stage, so has a good chance.

Hope we see the return of some old friends on the thread this week. I was wondering how Flora's mother is. Marias, Helen and many others are also in my thoughts.

Enjoy the sunshine if you have any today.

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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Jun 17, 2019 05:17PM maryna8 wrote:

Hi to all

It is so beautiful here, I can see why people put up with high cost of living, traffic congestion and so on. We have been on only a small part of California coast, I will try to take more pics today when we go today in a different direction.

Year-round mild weather, I hear, not hot nor cold, with rainy seasons and dry seasons..

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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Jun 17, 2019 05:47PM maryna8 wrote:

hi Gill and Sylvia

I was puzzled by the comments linking Trump and NHS, since I don't pay much attention to news when away. So I read about his appearance with Theresa May and the comments made about a trade deal, I suppose it raised the possibility of parts of NHS being privatised? Now the comments have been walked back, I hear.

That being said, it does seem from hearing what you say, that NHS needs something done to it to improve service. 68 days to wait for mastectomy is much too long, I hope someone could be put in place to address some of these things for UK. It's a big problem, for sure.

Back to vacation now. We were on a tight schedule for 2 days and were exhausted, now have been sleeping in and being fancy-free.

Talk to all soon, 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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Jun 19, 2019 10:21AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post. It is good to know what an excellent recovery you have made from all your treatment. It is great motivation for any newly diagnosed patients who may be viewing. It is true that we all react differently to the various treatments and I think a lot depends on our state of health when we begin.

I do agree with you about the state of the UK. I do not feel optimistic about the future of the NHS or indeed of this country in general. There is so much selfishness and greed. Did you see the programme Despatches on Channel 4 on Monday evening? It was a truly frightening revelation about what is happening with prescribed drugs. The criminals have got hold of them and we do not know whether the drugs being used in the UK have been contaminated in some way and whether they actually work. I was shocked at the mention of the drug Herceptin used for HER2+ breast cancer and whether it is working for patients because of adulteration. These are prescription drugs used in the health system and not anything bought online and the system does not seem able to control it. It means that we do not know whether we are getting a genuine drug or not.

Have you been watching the Conservative leadership debates? I have found them an absolute disgrace. It is frightening to think that one of these will become PM.

The thread is not doing well lately and I tend to think that a lot of the information with regard to breast cancer treatment must be quite well known now.

It is true that we are not hearing from people that made the thread quite active.

I do hope that Michael does well on his anti-diabetic diet.

We have had some well needed rain and now need some sunshine.

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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Jun 19, 2019 10:30AM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your photograph.

I was not surprised by Donald Trump's comments about the NHS. So much of our once wonderful NHS has been privatised. It is very sad but it has been overwhelmed by too much demand and too few medical staff on the front line. I wonder how many people know in this country that Boots Pharmacies is now owned by an American company. Boots was always a part of the UK, along with Marks and Spencer. From the programme I mentioned to Gill, I discovered that Lloyds Pharmacies are also owned by an American company. It amazes me that we have sold off a lot of our businesses to foreign countries.

I do hope you are enjoying your holiday.

As you can see, not much has been happening on the thread this week.

Tomorrow June 20th it will be 14 years since I was diagnosed with breast cancer. It does seem a long time ago.

Thinking 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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Jun 19, 2019 10:54AM Rosiecat wrote:

Hi Mary,

When Donald Trump visited the UK in early June, he talked about offering us a 'phenomenal' trade deal with the United States post Brexit. He also said that everything in the UK would be on the table including our NHS. After a public outcry, he backpeddled, telling us that the NHS would not be part of the deal.

The NHS has been starved of money by the Government. Also new NHS hospitals have been built by PFI, (Private Finance Initiative), leaving Hospital Trusts with massive debts and very little money left to spend on staff and equipment. If people want private health care there are a number of insurance schemes available. There a private hospitals in most, if not all cities.

The photograph shows a beautiful coastline. Imagine the weather being not too hot and not too cold - perfect.

I like the idea of sleeping in and being fancy free! Enjoy every minute of your holiday.

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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