We are 213,316 members in 82 forums discussing 152,270 topics.

Help with Abbreviations

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 07:43AM - edited Oct 20, 2018 09:58AM 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 04 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
Log in to post a reply

Page 412 of 414 (12,394 results)

Posts 12331 - 12360 (12,394 total)

Log in to post a reply

Nov 7, 2018 01:20PM SusieW5 wrote:

I have often wondered about teeth/gum health which is also supposed to be implicated in heart disease. Maybe they have found a cause/effect that I don't know about but isn't it more likely that people who neglect their teeth also neglect other areas of health care?

Any thoughts?

Susie

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/14/2018 Lumpectomy Chemotherapy 4/20/2018 Radiation Therapy Whole-breast: Breast
Log in to post a reply

Nov 7, 2018 03:04PM Rosiecat wrote:

Hi Susie,

I think one of the issues here is probably poverty. People coping on a low wage or benefits may neglect their teeth because caring for them is just too expensive. Dentists, hygienists, and also products like floss or interdentals are beyond their reach. Poverty causes depression which leads people to spend the little spare cash they have on the quick fix eg fast high fat or high suger food, alcohol or smoking. These all cause heart disease. The problem with research in recent history seems to be that too few people are followed over too short a time.

As I understand it, the plaque which builds up on neglected teeth is capable of causing an infection which affects the heart if it breaks off and is swallowed.

Have you been to see the lights around the Tower of London in honour of those who fell in WW1? I wanted to go, but the husband thinks that public transport is out of bounds for me whilst undergoing chemotherapy. Not sure he's right as those living in London whilst having treatment have little choice but to use public transport.

Apparently Church bells will be rung all over Norwich on Sunday to mark the Centenary. However, as we have to lay the wreath at the village Cenotaph and then spend the afternnon delivering Parish Council notices around the vlllage I'll miss anything happening in the city. What is it about being over sixty that means you no longer have any time for yourself?

I might use the vacuum cleaner on my head tomorrow. A friend who underwent chemotherapy a couple of years ago tells me it's much safer than shaving the hair off which risks cutting yourself.

Hope the radiotherapy sores are now healing.

Gill X


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Nov 7, 2018 04:07PM SusieW5 wrote:

Hi Gill,

There's much sense in what you say about teeth/gum health. Mind you, when I was last looking for a new dentist, I just assumed that I would have to go private but found that the nearest one to me would take me as an NHS patient. I guess that, once again, London has capacity that other places lack. Still, anything other than a basic check-up is as expensive as private. I paid £55 to see the hygienist recently as I'd been told to get my teeth in the best possible state ahead of Zometa.

I was advised to avoid public transport during the rush hour during chemo, which I try to do anyway on the grounds of comfort. But I was having the injections to maintain my immune system as a matter of course and had no problems with infection. Bit of a waste of those one-use face masks I bought in bulk from Amazon! I haven't been to the Tower, though. I'm sure it looks great.

Saw the radiotherapy nurse this morning and she says it's improving. We've left it that I'll ring for another appointment if I'm not satisfied with my progress next week, but she said that 7-10 days should see them cleared up.

I shall be in Norfolk over Christmas, by the way, based in Cromer with the in-laws. I want to visit Norwich Cathedral. Have been there before but it was about 30 years ago.

Susie X

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/14/2018 Lumpectomy Chemotherapy 4/20/2018 Radiation Therapy Whole-breast: Breast
Log in to post a reply

Nov 7, 2018 06:25PM Rosiecat wrote:

I was walking along the front at Cromer only yesterday, spent a good hour on the pier watching the waves crashing in. Visit Cromer much more often than Southwold nowdays, though Southwold is nearer.

The Anglican Cathedral in Norwich is well worth seeing. It's survived the Reformation, Cromwell and the last war. I go to the Catholic Cathedral which has much less history and bling, but is very peaceful. My husband and I are the Catholic Diocese of East Anglia's Archivists. So have a good knowledge of one Cathedral, but only know the basics of the other.

I was lucky enough to take out private insurance with my dentist about 25 years ago. Although I can't believe it's cost effective for him and though he no longer runs his insurance scheme, he has kept his old customers on. I should arrange an appointment before Zometa treatment then. My dentist is up to speed on the impact of different meds on teeth and gums and is usually a reliable source of information so I'll ask about Zometa and see if he's ever come across damage to the jaw, ulceration or necrosis.

Off to bed now. Pleased that you're healing well.

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Nov 8, 2018 05:32AM flgi wrote:

Hello all,

I have been enjoying your descriptions of autumnal changes and walks - the descriptions of the East Anglian coast particularly strike a chord with me. My father (who, following an out-of-the-blue head injury in his mid-70s is now like someone with advanced dementia) has lived on that coast with his partner for about 8 years. He is in Aldeburgh, Suffolk, so not that far from Norwich. Southwold is also familiar to me.

My dad enjoyed moved to Aldeburgh about four years before his accident, and , since then, it has actually been a brilliant place for him. It has just about been possible to keep him at home with a carer (and his partner is 15 years' younger than him and still very energetic) and he spends much of the time sitting in his chair gazing out at the sea and at the "promenaders" on the main coastal path. I think it is a very peaceful place when your mind is as beleaguered as his is.

Although what happened to him is terribly sad, we have, over time, adjusted to it, and the knowledge that he spends his days watching the sea and the wonderful East Anglian skies, fed and watered by kind people and his devoted partner, is comforting to me (relatively-speaking of course).

Of course, it also allows me to concentrate on my mother. Speaking of which (or I should probably say "speaking of whom") she is going to be starting paclitaxel next Tuesday after a 5 week break from chemo! We were worried about the length of break, but Dr L assured us that it wasn't a problem, and that the effects of the AC chemo (the positive effects against the cancer) would have carried on during that break; the effects don't just stop when you end the cycle.

My mum is doing much much better now, and , as I mentioned earlier, reluctant to start drug therapy again. However, as Gill/Susie said with the Zometa, if the cancer comes back, she doesn't want to think "what if I hadn't tried it.."

As discussed before, she will definitely be paying for it ( she hasn't told me how much). She will therefore be treated at the private hospital in Oxford, and have "private" consultations with Dr L as part of this.

It is, as you have all said, pretty shocking that this is the case, but , for now, we are going to direct our energy towards looking after her while she undertakes this new chemo-challenge. Afterwards, I think I will take this matter higher...

I do appreciate you all thinking of me and my mum, and sympathising with her regarding her ordeal.

Mary- it is comforting to hear that you were not able to finish the Taxol, but are almost 5 years' out of treatment doing well (and congratulations again on that). I seem to hear so many stories of people who took chemo in their stride, and, if they have "success stories", I don't feel I can extrapolate from them to my mum, who (whatever happens with Taxane) won't have completed the recommended cycle.

It does really help to hear from others who weren't able to complete the treatment but have still gone on to do well, so thank you for admitting that Taxol was really hard on you too.

I do know, ultimately, that luck plays a big part in one's outcome with cancer (luck in the doctors one has; the country one lives in; the body one inhabits; the forum one is on!) and I try not to nurture too many expectations re: my mum's outcome, either positive or negative. She is doing the best she can, given trying circumstances, and that is all any cancer patient does. That said, I am trying to encourage her to eat a bit more healthily and drink less, because what harm can it do!

Gill - it sounds as though your chemo is going pretty well so far. Susie, I hope the burn heals soon. Sylvia, I hope life is trundling along comfortably and that Raymond has recovered from his fall.

Flora x







IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
Log in to post a reply

Nov 8, 2018 06:27AM SusieW5 wrote:

All best wishes for your mum with the Taxane, Flora.

Susie

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/14/2018 Lumpectomy Chemotherapy 4/20/2018 Radiation Therapy Whole-breast: Breast
Log in to post a reply

Nov 8, 2018 07:00AM flgi wrote:

Thanks Susie- the spelling of "taxane" still always reverts to "taxmen" on my computer!


IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
Log in to post a reply

Nov 8, 2018 07:39AM SusieW5 wrote:

LOL. More scary than the taxman.

Susie

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/14/2018 Lumpectomy Chemotherapy 4/20/2018 Radiation Therapy Whole-breast: Breast
Log in to post a reply

Nov 8, 2018 08:11AM Rosiecat wrote:

Don't know about that. Interesting image of little man with briefcase coursing through my veins now


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Nov 8, 2018 09:17AM Rosiecat wrote:

Hello Flora,

Aldeburgh is another favourite spot for us. Very dramatic brooding skies, crashing waves on some days, sunshine and the peaceful lapping of the waves against the pebble beach on others. So many little shops and quaint buildings for you to explore when you're able to visit too. I'm so sorry that your Dad's head injury has taken away his ability to enjoy his retirement here, it's seems cruel. He's so fortunate to have carers and such a devoted partner.

I'm pleased that your mum has found the confidence to continue her treatment. I hope this time all will run smoothly. I do think it's the right decision, who wants 'what ifs' hanging over them?

Many of us are angry at the scandal of your mother being forced to pay for treatment. You're right though, for the moment it makes sense to have the chemotherapy and then go into battle with the NHS Ethics Committee or your MP etc.

Flora, with so much going on in your life, do try to find time for yourself too.

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Nov 8, 2018 10:28AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your last post. I agree with everything you say about the state of the NHS. I am not optimistic about its future. As the sixth wealthiest nation in the world, I think the powers that be should be ashamed of the inequality and poverty.

As for oral health, it is well known that gum disease (periodontal disease) is a big risk factor in heart disease. It is probably a risk factor in most chronic diseases because of a sick microbiome system in the gut, where the healthy bacteria are lacking, mainly due to the Western diet. It seems we are not eating enough fermented foods with the top one being sauerkraut, followed by plain yoghurt with live cultures, tempeh, kombucha, kefir and so on.

How are you feeling these days? Keep us informed, otherwise it is difficult for everyone to remember because you have not managed to put your details at the end of your posts.

Tell us a little more about yourself. What did you do as a career? Do you have any children? What are your main interests and hobbies? Have you any strong dislikes?

Keep well and keep happy.

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
Log in to post a reply

Nov 8, 2018 10:42AM sylviaexmouthuk wrote:

Hello Flora,

I just wanted to pop in to wish your mum luck with her chemotherapy treatment and I do hope the taxane drug paclitaxel (Taxol) will not upset her too much.

Raymond has recovered from his fall and we have had a very busy week carrying out our duties as directors here in our apartment complex.

Tell us a bit more about yourself and your mum. It is important not to define ourselves as cancer patients. We are whole people apart from this.

Take care. Best wishes to you and your mum.

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
Log in to post a reply

Nov 8, 2018 11:09AM Valstim52 wrote:

Hello Everyone

I've been off the boards for a while. I have hit my 3 year mark since diagnosis. My MO gave me a clean bill of health. So why do I have all these ailments? Lymphodema in my arm and my arthritis is terrible when my cortisone shots are due.

On the good front, there are new things coming out for Triple Negative, so we all have to hang on.

For those in treatment I send virtual hugs. Hydrate and eat when and what you can to keep up your strength.

For those just finishing treatment remember your body has been assaulted. Your mind ravaged. Give yourself time.

It will take months to feel back to a semblance of your prior self. For some of us, we will have a new normal. Adjusting is the word I think of post treatment. Adjusting to my new mind and view of things.

Thank you Sylvia and Mary for tirelessly keeping this thread and lifeline going. I appreciate you all.

Val

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/10/2016 AC + T (Taxol) Surgery 5/23/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
Log in to post a reply

Nov 8, 2018 12:15PM Rosiecat wrote:

Hello Val,

Congratulations on being three years out from diagnosis. Sorry to hear about the ongoing health issues though. Lymphodema and arthritis together sound like a particularly difficult combination to cope with.

I quite agree with what you say about the need to adjust ie giving our bodies and minds time to catch up. Being kind to ourselves after very busy and full lives can be a hard concept to take onboard. My own feeling would be that I simply don't have time. I'm only one treatment in, so it's quite possible that I'll change my mind.

I'm keeping hydrated which has never been a problem for me. Our water is from our private underground supply, it's untouched by added chemicals or the fertilizers and other toxins used in farming and tastes amazing. I'm sure I'm eating far too much though and am avoiding the scales for the moment.

Your right, in the the not too distant future, triple negative may well be treated very differently, and conventional chemotherapy with all it's side effects will be looked on as barbaric. My cancer is triple negative metaplastic and often doesn't have much of a response to chemotherapy, some subtypes seem to respond quite well though. I'm hoping for the best.

Take care,

Gill X


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Nov 8, 2018 05:23PM maryna8 wrote:

Hi, Sylvia

It took me several days to get used to the new time, and now I just have to get used to my world being dark by 5 PM. I must remember to keep up intake of Vitamin D, because we never get much sunshine in November. I have been invited to Thanksgiving Dinner, and I can hardly believe so much time has passed so quickly.

Yes, Guy Fawkes Day. I watched a short mini-series at one time over the last year. It was called Gunpowder, and I didn't immediately realize it was based on Guy Fawkes and his doomed plot. I hadn't really ever given it much thought before, but it was a good mini-series.

Here the news is also incessantly about Donald Trump, and Theresa May gets a mention infrequently. Brexit vote seems like it was a long time ago. We have had another shooting by a disturbed person, many young lives lost.

I am very happy that Gill, Susie and Flora are here and that Adagio checks in sometimes, as does Kath. Also that we did hear from Hanieh and from Marias. but I also miss our friends from all over the world, I wish them all the very best, and hope they are doing well wherever they may be. I wonder if Hanieh ever made it to Turkey? I don't think she said. I'm glad that Marias was able to go back to work, hopefully she will get her strength back soon.

I see that your recent copy of What Doctors Don't Tell You, has an article about Dentistry's Secret Weapon. The end to drilling and root canals. It is about treatment with ozone. I had to look this up because it is not well-known over here as far as I know, and I go to a dentist and a periodontist regularly. It is probably something that is done by naturopathic-type dentists, but is probably not studied and approved by the FDA, so regular docs are not going to do it. I have an appt. with periodontist in a week or two, and I will ask about it. A few years ago my dentist recommended I have a root canal, and I refused and he said then I should have it pulled. I had to go to an oral surgeon to have it done, because it had twisted roots, and he said it was okay not to replace it because it was in the back and wouldn't interfere with my bite by its' absense. I had heard too much negative stuff about root canals but I hadn't heard about ozone treatment and I wouldn't have known where to go anyway. From what I have read, it sounds great, I hope it does really work and can become common. It should be much cheaper too, maybe?

I have to subscribe to What Doctors Don't tell You to read the article and I haven't yet decided if I want to order it, I am going to check it out for price and so on. It sounds like something I would enjoy.

I had a doc appt. yesterday and I will come back later and tell you about that.

I'll talk to you again soon, my friend. Love,

Mary


Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Nov 9, 2018 04:58AM Rosiecat wrote:

Hello Sylvia,

I'm feeling extremely well and full of energy. I have my next chemotherapy next Thursday, this time with extra anti-nausea medication.

I'll fill in a few gaps for those who might be interested.

I have two children, both grew up and left Norfolk many years ago. My son , the elder of the two is an IT consultant and lives in Scotland, my daughter is a Doctor and lives in Hampshire. I'm also a Granny to a very mischievous 3 year old boy and a very sweet natured nine month old girl.

I gave up teaching (religious education and English) before the children came along which was actually a relief. Once the children were in school I began voluntary work as we felt that one wage was enough to keep us all going in the simple lifestyle we'd chosen. I've worked with homeless people, those who misuse various drugs and substances, and in a hospice. The most interesting was my time as an Appropriate Adult in Norwich custody suite - there might be a book there! I hope to go back to the hospice when this 'glitch' is out of the way. I miss being there, but as I worked very closely with patients directly on the ward it seemed sensible to take a break. I also needed to consider the infection risk. If I do feel that I can't face the wards again, I can still be involved. We are two years into a project to build a more spacious modern hospice. None of the cash will be provided by our NHS Trust, so once we have the money together the Hospice support group will own the building - we've already paid for the land. The Government will be unable to privatise us or close us.However, the staff will be provided by the NHS as this would be impossible to fund by ourselves, so we won't be entirely bombproof.

Fortunately, my husband and I are the Archivists for the Catholic Diocese of East Anglia, which is huge, covering Norfolk, Suffolk, Peterborough and Cambridgeshire, so I really don't have any time to think too much about my diagnosis and what the future might have in store.The older I get, the more I seem to have to do, I really don't have time to fit cancer into my schedule!

Take care of yourself and Raymond.

Love,

Gill X


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Nov 9, 2018 05:00AM - edited Nov 9, 2018 05:01AM by Rosiecat

This Post was deleted by Rosiecat.
Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Nov 9, 2018 06:41AM maryna8 wrote:

HI, Gill

Isn't it wonderful how every cat has such a different personality? My last 2 cats were so different, one was very sweet and shy, she liked to lay in a little niche by my husband's chair and he would pet her. The other cat had a very different personality, she was not nice at all, and tolerated nobody but me. She would accept my husband but if anyone else was around she would hide, and if they did try to associate with her she would scratch and yowl. I don't know why she was so obnoxious, all the other animals I've had were very sweet. Ah well, I suppose there was a lesson in it!

Sorry about the tree diseases, I hate to hear that anywhere. We have them too, and for some things there aren't any cures. Other things can be sprayed for, but I really don't like all that spraying around of various toxins.

I wish you could come over here and get some wood for your heating system. I have so many downed trees in my woods from ice storms, droughts and then hard rains. They are lying everywhere.

I guess TNBC being 10-15% of women does seem like a lot, but I know a lot of women who have or had BC and have only known one with TNBC. She passed away last year, her cancer had metastasized to her lungs already when it was found. My BC surgeon told me that in her opinion, we should have breasts in our childbearing years, but then they should just wither up and disappear so as not to cause problems.

So women who get up early shouldn't have BC? I'll add it to my list of positives!

I'm glad you are feeling so well! You certainly do have a lot you are involved in, that should be a big positive for you, to have so much waiting for you when you finish treatment. And children and grandchildren, it sounds perfect. It's probably good to step away from crowded wards now, you can always go back if you want later.

I am also a Catholic, although I don't do any archiving. Our history is quite brief compared to yours, our county was settled by French, English and German emigrants in the early 1800s, and the Germans were the ones who stayed. They were predominantly Catholic and built many churches of the local limestone, the oldest being built in 1838, that are still in use today. Alas, some of them are in danger of being closed due to the priest shortage among other things. The church I attend was touch and go for a while, but it survived but was demoted to a chapel. Personally, I think the Vatican could sell some paintings and support a lot of missions, but that's just me. Nothing in this world is perfect, I suppose, even the people who tell us we should be more perfect!

I'll be back later, love

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Nov 9, 2018 06:48AM maryna8 wrote:

Our first snow fell overnight, a bit early but looks nice.

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Nov 9, 2018 07:03AM maryna8 wrote:

Hi, Val

It's very good to hear from you, and glad you are doing relatively well. I guess we always have to be glad about our NED status, and put up with the rest. I am with you, I have bad knees, a bad shoulder, and my ankles swell if I stand or sit too long. My neuropathy bothers me, but acupuncture helps it a lot. I'm glad the cortisone shots help you, I get them too but my last shot in August didn't do much. Or maybe it did. Sometimes I think they are not working until 3 or 4 months pass, and then the added degree of pain makes me think maybe it was working. I am sorry you are afflicted with lymphedema, I hope you can deal with it allright.

A new normal is right, it has taken me a long time to come to grips with that.

Are you planning, or have you been, on any trips with your DH? I hope something is in the works for you, it's always something to look forward to for me. Me and sis-in-law have one in planning stages, but it's not finalized yet, somewhere warm in January, I think.

Thanks for appreciating my presence on this thread, Sylvia is the tireless one, she is always ready to help and advise, and is constantly studying.

I shall talk to you soon I hope, love,

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Nov 9, 2018 08:08AM SusieW5 wrote:

Hello All,

First Zometa infusion today, seen promptly and all done in 15 minutes. Already booked in for my next in May. Funny to think that there will be people in the chemo unit next May who don't even know they have cancer yet. Not funny-haha, obviously.

I asked the nurse who gets it. She says that it used to be just women whose BC had already gone into the bones but that the evidence that it stops spread to the bones is now overwhelming. At the moment it's routinely given to Triple Negs and to post-menopausal woman (presumably we are assumed to have weaker bones) but it sounds as if it will soon become a routine treatment for everybody.

She also said that I was unlikely to experience side effects with this preventative dose. So I have decided not to have any. Nerdy

Susie

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/14/2018 Lumpectomy Chemotherapy 4/20/2018 Radiation Therapy Whole-breast: Breast
Log in to post a reply

Nov 9, 2018 08:20AM maryna8 wrote:

Hi Flora,

I wish your mother the best next week as she starts her Taxol (paclitaxel) treatment. It is possible that it won't cause her so much grief as the first rounds did, everyone responds differently to different drugs. And I think it's good she will be at Oxford with Dr. L, since you all got along well and respected him highly. The details can be worked out later, as you said.

The taxane drug that I had was called Taxotere (docetaxel). Or there is paclitaxel (Taxol), which I understand is what your mother is going to be given.

I have also talked to people who breezed through their chemo, but also many who didn't have an easy time. I look forward to the day when these drugs are no longer necessary. I thought I was quite healthy, and 61 and active when I started this journey, but it wasn't easy. My oncologist retired on my last day of chemo, which I found disturbing. A month later I returned to the center for a check-up, and in walked a very beautiful woman who turned out to be my new MO; she promptly informed me that I had not done enough Taxotere and would have to have 2 more infusions! I was so shocked I was speechless, and then just started saying "no, no, no", and cried. She and the nurse left the room, the nurse came back soon and patted me on the back and said after reviewing my records they agreed I was finished according to the previous doc's orders. Of course by then I was doubting everything so I asked "Which doc is right?" She said they all have different protocols, and not to worry about it. What had happened was that because of my side effects, the first doc had started shrinking my doses as they went along, so I hadn't done enough of the drug according to her regimen plan. At any rate, here I am, for better or worse. We all have different paths through this maze, and have varying levels of difficulty. I hope your mom finds some good luck and can get through this in good shape.

Is your mother thin? I started out quite slim, and lost a lot of weight because of very little appetite. Sometimes it's necessary to make oneself eat, or drink protein drinks if you can find the ones that are not loaded with sugar. The drinks the Center gave me were awful, I thought. I had a friend who would bring me much better ones sometimes, they were pricey but I should have done more of them and perhaps not have lost so much muscle. Sometimes I think the people with extra weight on do better with chemo, but that's just an opinion.

I am sorry about your father, but it does sound as though his life is quite idyllic for the state that he is forced to live in. Very sorry of his sudden injury, I'm sure that was hard to adjust to for you and family.

I will talk to you soon, love

Mary


Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Nov 9, 2018 08:41AM SusieW5 wrote:

What a horror story, Mary. I would also have shrieked 'No, no, no!' if told I had to have more Taxane when I thought I'd finished, what with the vile taste in the mouth for ten days after. I drank a lot of banana milkshake -- not the healthiest thing, I know, but it tasted good and gave me some much-needed calories.

Susie

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/14/2018 Lumpectomy Chemotherapy 4/20/2018 Radiation Therapy Whole-breast: Breast
Log in to post a reply

Nov 9, 2018 10:28AM sylviaexmouthuk wrote:

Hello Val,

Thank you for your post. I was so glad to see you back on the thread.

First of all I want to say congratulations on reaching three years since diagnosis and congratulations on getting a clean bill of health from your medical oncologist. The lymphoedema is a chronic side effect from breast cancer treatment and it can come from the surgery, the chemotherapy (the taxane drugs) and radiotherapy. I think it is quite common and has not been given enough attention until quite recently. I know from your previous posts that you have suffered a lot from it. My lymphoedema does not bother me that much and I just do the exercises and manual massage. I think my biggest fear now is getting stung when gardening, because of the danger of infection and cellulitis.

I do understand that pain from arthritis is very debilitating. Did you have it before you had the cancer treatment?

Thank you for posting those words of wisdom to those newly diagnosed and those going through treatment. We all know, having been through it, how important it is to keep hydrated. We all know that it takes time to recover from this dreadful treatment and that your body is not going to bounce back overnight.

Above all, none of us must ever underestimate the importance of good nutrition all of the time.

Many thanks for your kind words to Mary and me. They are much appreciated.

Take care of yourself, Val, and keep in touch whenever you can.

Are you still busy writing?

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
Log in to post a reply

Nov 9, 2018 10:46AM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your post and your photograph.

I agree that in these dark winter months it is very important to keep our intake of vitamin D.

As for Brexit, we are supposed to be getting breaking news from Theresa May next week. One thing is for certain, it will not be the Brexit for which a lot of people in this country voted. Theresa May was and is a remainer.

I agree that it is good that we still get occasional visits on the thread from those that have finished treatment and are doing well. We need these visits to encourage and motivate the newly diagnosed and we must support, comfort and give them lots of hope. I do hope we shall hear from Marias, because we really do not know if she has finished treatment and can put everything behind her. As for Hanieh, I would really like to know what has happened to her and whether she did go to live in Turkey and left Iran. I was watching some news item about Iran yesterday and saw pictures of Tehran. What struck me was that most of the men appear to be dressed in Western style clothes, but the women are not. It is like looking at two different ages, the modern and the medieval. With Hanieh, we still do not know what happened with her recurrence of breast cancer. As for Gina, I do hope she is fine and has got through her treatment for recurrence.

I can recommend the magazine What Doctors Don't Tell You. It has so much information in it. I was surprised that you think the ozone dental treatment is not very widespread in the US, because Raymond and I Googled it about available dentists and most of them seemed to be in the US. I think the magazine WDDTY has been around for some time. We used to read a smaller format version of it in Canada many years ago.

That is all for now. The rain is absolutely falling down here and there is a weather warning for high winds.

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
Log in to post a reply

Nov 9, 2018 11:06AM maryna8 wrote:

Susie,

You always make me smile, I am over here across the Atlantic smiling because of your post. You have decided not to have any side effects, that's the attitude to have!Happy

Yes, eating is difficult when most things taste like paste, I liked eggs, and yogurt when I had chemo. I think I had eggs almost every day. I had a blood test after chemo and my cholesterol was higher than normal, not sure if eggs were the cause but they kept me going. Banana milkshake sounds good now, actually.

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Nov 9, 2018 12:29PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for a most interesting post. I was so glad to know that you are feeling extremely well and full of energy. I do hope all goes well next Thursday when you have your next chemotherapy treatment. Remember that with chemotherapy treatment fatigue can build up as the treatment progresses so make sure you do not overdo things and above all keep well hydrated.

I was very interested in knowing about your life and seeing you as a whole person who happens to be going through cancer treatment.

You certainly lead a very busy life and you have done a lot of interesting and greatly needed voluntary work. Given some of the voluntary work you have done, you must be a very strong person.

I do understand why you have taken a break from the hospice work and I do hope all goes well and that you are able to build a more modern spacious hospice. Hospices do such good work. My older brother died peacefully in a hospice back in 1995 and I spent a lot of time there with him. I saw the wonderful work that the staff did.

I can understand what a busy life you lead with all that you do. In a way, it is a good thing as it stops you from dwelling on the breast cancer. When I was going through treatment I kept pretty busy as well and kept my life as normal as possible. I remember my oncologist asked me when I was first diagnosed whether I would like visits from the Hospiscare nurses in Exmouth and I decided that I would. We used to have really interesting talks and I still bump into them in Exmouth.

That is about all for now. Keep up all your good work and we shall all be thinking of you next Thursday.

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
Log in to post a reply

Nov 9, 2018 12:34PM sylviaexmouthuk wrote:

Hello Susie and Flora,

Many thanks for your contribution to the thread this week. I hope you both have a good weekend and that you do something relaxing and enjoyable this weekend, despite the weather.

Thinking of you both and sending best wishes to you and to Flora's mum.

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
Log in to post a reply

Nov 9, 2018 04:41PM flgi wrote:

Dear all,

How nice to hear a bit more about you, Gill, and thank you as ever for your humour, Susie, and your wise words, Mary and Sylvia.

A little bit about me: I'm 42 and a stay-at-home mum to four lovely children- 3 sons and a daughter. The oldest is just 10 and the youngest (boy/girl twins) are 5. There is an 8 year old in the middle (who is a very typical middle child-just gets on with things much of the time).

My mum lives locally to me and has been a very involved grandmother for 10 years. It is the least I can do to help her out now.

We live in Headington, a lovely part of Oxford, with wide streets, nice parks and a truly wonderful community- and, most importantly, a recently-acquired Waitrose! It is the part of Oxford that houses all the hospitals, which has actually proved very useful what with all the medical issues our family has been dealing with recently.

I never found a defining career for myself as such, but, pre-children, spent 5 years working in museums, then went back to uni and did a Psychology degree at Oxford Brookes. The intention behind this was to become a Clinical Psychologist, but I had no idea how competitive a career this would turn out to be! I spent three (interesting) years trying to do the necessary work experience in Psychiatric hospitals to get onto the training course for Clin Psych, but failed to get onto the course two years' running. At this point, I was early-30s and truly wondered if I might spend the rest of my life trying to get onto this elusive course, so my mind turned to children, and the rest is history...

All 4 children are are at school now, and I find myself doing quite a bit of volunteering in various community-related projects, which suits me very well (even if it's not very trendy for mothers to do this sort of thing these days. I think I'm only "excused " by society for not going back to work because of the number of children I have!).

Anyway, that's a bit about me, to flesh out the remote "flgi" persona a bit more.

I hope you all have a good weekend

Flora x


IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
Log in to post a reply

Nov 11, 2018 12:26AM adagio wrote:

Flora - just to add to Maryna's experience of Taxol. I had what was called dose dense chemotherapy - which was 4 treatments of Adrimaycin + Cytotoxan followed by 4 treatments of Taxol - called dose dense because each of the treatments was only 2 weeks apart - so it was fairly aggressive. It was difficult because I was super sensitive to the chemicals and of all of the 8 treatments only my first one was the full dose. After that the dose was reduced to keep side effects at bay. My reaction to the first drugs was rash and itch on my upper body and hands. The taxol was the worst for me, and the 2nd treatment I had a severe systemic reaction - which was most unpleasant. I did not want to continue with the taxol, but did so at my MO's behest but at only 60% dosage. I was paranoid about getting neuropathy and would happily have quit the treatments early - but I did complete them at the reduced dosage.

All of this just to give you another view point and to help understand that we each react differently to particular drugs and we really do not know how they are going to affect us. However, I am now five and a half years since the end of all my treatments and I was discharged from the Cancer Agency this past April. Cancer treatments are a nightmare, but we each have to choose our path and sometimes the direction changes along the way.

Wishing only the very best for your Mom. And also for you as you go through this with her - she is most fortunate to have you.

Dx 8/21/2012, IDC, 2cm, Stage II, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 9/25/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/20/2012 AC + T (Taxol) Radiation Therapy 3/25/2013 Breast

Page 412 of 414 (12,394 results)