Oct 10, 2018 02:32PM SusieW5 wrote:
They say it's going to be the worst storm in 100 years! Bateen down the hatches.
Share with others who have ER-/PR-/HER2- breast cancer.
Posted on: Sep 12, 2010 08:43AM - edited Jan 21, 2019 10:12AM by sylviaexmouthuk
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 07 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.
Posts 12151 - 12180 (12,937 total)
Oct 10, 2018 02:32PM SusieW5 wrote:
They say it's going to be the worst storm in 100 years! Bateen down the hatches.
Oct 11, 2018 07:54AM maryna8 wrote:
I think it was a record-setting storm for that part of Florida, the only good thing about it was it moved fast and kept going, although staying pretty strong even on land. Glad we don't have those where I live, too far from the ocean. News will be trickling out today about all the devastation, so many people's lives impacted.
Oct 11, 2018 08:36AM maryna8 wrote:
I am so glad all is well with you, I had the feeling that you were busy traveling, enjoying family and living your life. It does sound like life is good for you, hurrah! And I can see why you are ready for some peace and quiet for a bit now.
I do still keep up with my acupuncture appointments too, I find them very therapeutic. I still have a mammogram every year. I have a general blood test once a year, but not as a part of the oncologist visit. She says labs are of no use in breast cancer check-ups. So I request the blood tests from my General Practitioner once a year, just to keep an eye on things like cholesterol, hormone level, kidney and liver function etc. Call me paranoid, it's probably true. I wish I could speed-walk the miles every day I used to, but now between the neuropathy and the bad knee I can't do it, but I do as much as I can.
Your trip to Turkey sounds so enjoyable, the history of the area remarkable. Our cruise ship wouldn't stop there 2 years ago because of some trouble they were having, but what makes the news isn't the whole truth about an area and its' people, I'm so glad you had a great time. I remember reading that explorers are 99% sure that Mount Ararat in Turkey is the site where Noah's ark landed. Ephesus sounds fascinating too, so much history.
Great pictures, what a strange landscape the balloons are floating over! The unearthed library is beautiful, and you look so happy and healthy.
Great to hear from you!
Later, love, Mary
Oct 11, 2018 08:37AM - edited Oct 11, 2018 08:37AM by Rosiecat
I'll let you know which chemotherapies I'll be having when the letter arrives from the Oncologist. I really should have written it down. Once my local hospital realised that a senior Oncologist at Guy's hospital had been consulted, it was agreed that I would have an Oncologist and chemotherapy locally. I don't have an appointment yet, but will begin operation pester later this afternoon.
Oct 11, 2018 08:44AM helenlouise wrote:Hello Sylvia
Oct 11, 2018 09:16AM Rosiecat wrote:
Very glad you're safe and unharmed by this devastating storm.
Yes, I'll certainly be acting on Dr. Harries' recommendation. He knew all about spindle cell metaplastic cancer and has a treatment plan that looks very doable. I'll run it past Sylvia when I get his email or letter. Sylvia can probably give me some ideas regarding side effects. I've reached the point when I take nothing for granted and always do my research.
Oct 11, 2018 09:29AM flgi wrote:
Gill: Good luck with Operation Pester. Sometimes the most useful thing about a remote second opinion is that it spurs the local hospital into further action.
This happened with us as well in the sense that Mr Harries' appointment led to my mother's care being transferred to a more experienced oncologist in Oxford (who agreed with all he had to say) and even led to an apologetic phone call from the original breast surgeon who had said "Over 70-no chemo" to my mum. She felt very bad we had had to spend money on second opinions.
Adagio: we haven't "met" before but can I say how lovely your photos were-particularly the balloons over Cappadocia. We had a very interesting trip to Turkey about 15 years' ago: we were also very impressed by Ephesus (though boy was it hot!) and liked Istanbul (particularly our boat trip up the Bosphorus and the Roman cisterns). We never made it as far as Cappadocia.
Helenlouise: glad Xeloda is proving tolerable. Great that the oncologists now have this extra chemo in their armoury.
Mary/Sylvia and everyone else: hope you're well and not overwhelmed by the state of the world/politics in general.
I am not an articulate protester or ardent political type but am a great believer in"starting local" when it comes to issues. I can't help too much with schools in Indonesia at the moment, but I can help at my children's local school; I can't solve the NHS crisis singlehandedly! but I can offer our spare room to people who have to travel miles and miles to Oxford for operations/chemotherapy; I can't change the way junk food is marketed but I can make the odd (hopefully!) nutritious, home-cooked meal for people at our local Maggie's centre.
This all sounds rather smug and sanctimonious- sorry! Honestly, I am no saint. I just know that my skills lie in helping out locally , whereas others' skills lie in campaigning, demonstrating, working in research, medicine, social care, overseas aid etc. It takes a mixture of personality types to enforce change, so just as well we all have different skill sets!
Anyway, enough philosophising for the day!
My mother has her next appointment with Dr L tomorrow and, despite the feeling that she never wants anything put in her body again, knows (rationally) that she should at least give taxane a try if that is what Dr L recommends.
love to all
Oct 11, 2018 11:27AM Rosiecat wrote:
You must be about halfway through your radiotherapy by now. Hope it's still going smoothly.
The healthy food course looks interesting and if I had more spare time I'd enroll. As it is, as soon as I was diagnosed, I gave up sugar and wine. Very difficult at first, but now I can't touch anything sweet. I seem to have more energy too and this morning out-walked my husband.
Didn't have time to visit the exhibition in London. Will try again as a pre chemotherapy treat. Being in London again made me realise just how much I missed the bustle, history and culture. Must go there more often.
Oct 11, 2018 11:48AM SusieW5 wrote:
9 down, 11 to go. Some sessions are easier than others and it seems to be very much down to which two radiotherapists I am allocated each day with some being quick and efficient and others less so.
I haven't given up sugar yet, though intend to do so soon. I have done it for lengthy periods in the past and not actually found it difficult. Some people reckon to get side effects when they try but I'm not convinced.
Oct 11, 2018 11:49AM SusieW5 wrote:
I think it's terrific that you are offering your spare room for people who have a long way to travel for treatment and cooking for Maggie's. I do realsie how lucky I am in London with so many hospitals within easy reach.
Oct 11, 2018 12:10PM Rosiecat wrote:
Having spoken to my breast care nurse this morning, I was left with the very strong impression that the multidisciplinary team have been somewhat shaken. When the surgeon said that if I wanted a second opinion I could always go privately, he probably assumed locally. I guess that Guy's still commands a lot of respect.
You do so much for your community, doesn't sound at all smug. This country would grind to a halt without its army of volunteers. I was a ward volunteer at my local hospice and after 21 years, was devastated to give it up when I had my diagnosis in August. Just felt that end of life care was not really the best place for me until I could deal with the cancer. May go back at some point though. Also volunteered as an Appropriate Adult with the police and with prostitutes, homeless people and substance misuse I'm now an archivist for the Catholic Diocese. I'm not a goody two shoes either, just insatiably nosey. People are so fascinating, I can't resist wading in. None of us would volunteer if we weren't getting anything back it has to be a two way thing. I've also made a lot of friends via volunteering.
I can understand you mother's reluctance after all the trauma. This time around, she'll be much more closely monitored and could always call a halt if, after a couple of sessions, she doesn't feel that chemotherapy is the right path for her. Seems unlikely that your Oncologist would want to take the risk of futher serious reactions.
Best of luck.
Oct 12, 2018 08:15AM maryna8 wrote:
"Operation Pester", I love that, good luck with it. That is very necessary these days, unfortunately. It did seem that you got in to see Dr. Harries quite quickly. How wonderful that he was so knowledgable about your specific BC.
The hurricane along our southern coast was so destructive, it moved fast but destroyed so much. Right now only 3 confirmed dead, but I think there will be more.
Oct 12, 2018 08:23AM maryna8 wrote:
I would not say that Sylvia and I are overwhelmed by the world/politics in general. I would say that we are curious people and interested in a lot of areas.
How wonderful that you are so giving to others. I'm sure that all of us here give what we can and are able to do, physically, mentally and/or financially.
Again, I am so impressed with you and Gill's description of Dr. Harries, sounds like he was just the person to get things going in the right direction for your mom. I hope she can be at peace with whatever decision she makes, I do think they will be taking extra good care of her from now on!
Talk later, Mary
Oct 12, 2018 08:29AM Rosiecat wrote:
The Oncologist from Guy's has recommended an anthracycline taxane based schedule, but there's an argument to spare these due to my hypertension, albeit well controlled. He would favour using them himself.
Typical examples would be FEC-C or EC-Paclitaxel weekly, with 4mg Zoledronic acid every 6 months for 3 years.
Radiotherapy has not been recommended in my case.
Any thoughts from those who've experienced any of the above?
Oct 12, 2018 08:45AM Rosiecat wrote:
Fortunately, I'm not afraid to pester when it's needed. Have to ask what if I hadn't gone for the second opinion and just believed everything the surgeon told me? Many women would have. I always thought our battle was with cancer, not the system.
When I saw the devastating impact of the hurricane I was convinced there would have been more deaths. As you say, there still might be. Complaining about the weather is a national sport here in the UK, but we're so fortunate really.
Have a good weekend.
Oct 12, 2018 09:37AM SusieW5 wrote:
I had three cycles of FEC, though not FEC-C and tolerated those very well. Many more problems with the three cycles of Taxane.
I'm having the first of my six-monthly cycles of Zoledronic acid in three weeks.
Oct 12, 2018 10:58AM Rosiecat wrote:
That sounds doable then, will have find out about the 'C' element. I know Taxane can be a nightmare, with difficult side effects.
Came up against another brick wall at the hospital. No Oncology appointment even in the pipeline yet. My surgery was 26 days ago.
My subtype of metaplastic has a poor prognosis but I can increase my chance of survival by up to 30% with chemotherapy. I'm so so angry.
Oct 12, 2018 11:39AM sylviaexmouthuk wrote:
Thank you for posting the names of your chemotherapy drugs. I was having a look at that combination.
FEC is a standard combination of drugs for breast cancer treatment. It stands for fluorouracil (5FU), epirubicin (Ellence) and cyclophosphomide (Cytoxan). I am wondering whether the last C on its own of FEC-C stands for carboplatin or cisplatin, the platinum based drugs. As for the EC, that is epirubicin and cyclophosphomide, I would think.
The different drugs are taken from different groups that act on cancer cells in different ways.
Cyclophosphomide belongs to the group known as alkylating drugs.
Fluorouracil belongs to the group known as antimetabolites.
Epirubicin is known as a cytotoxic antibiotic.
You then have the taxanes, docetaxel (Taxotere) and paclitaxel (Taxol).
As stated, there are the platin based drugs such as carboplatin and cisplatin.
The women on this thread have always said that both of the taxanes seemed easier on their bodies when done weekly.
You mentioned zolendronic acid, which is a bisphosphonate used for bone disorders. I am assuming that you will get this after you have finished chemotherapy and that you will have it every six months for three years. This will be given by injection. It was not something that was done when I had my treatment, but I was offered this kind of bisphosphonate to deal with the chemotherapy induced osteoporosis. I di not like the sound of this drug, which was to be taken orally at the time, and I refused it.
I do hope you will be able to get started on your chemotherapy without too much delay.
May I ask what you are taking for your hypertension?
You might want to bear in mind that taxanes can cause lymphoedema, but then so can surgery and radiotherapy. It is also the taxanes that cause peripheral neuropathy. I hope this helps.
Oct 12, 2018 11:43AM sylviaexmouthuk wrote:
I hope you had a good Thanksgiving weekend last week.
I am watching a series on the television about Canada. The first one was about the winter season in Hudson Bay and all along the Boreal forest of Canada. It was so interesting and I was amazed watching how the wildlife survived.
Oct 12, 2018 11:47AM sylviaexmouthuk wrote:
Raymond and I do not know what to make really of the article about telomeres. It does sound a bit like black magic! So many assumptions are being made about the human body.
It is a bit wild here today but we are getting the rain we heed so badly.
I was wondering what you think of the following statement that I picked up on the drama of Vanity Fair that I have been watching. "A world where everyone is striving for what is not worth having".
That is all for now.
Best wishes and love to you and everybody in our group.
Oct 12, 2018 11:53AM SusieW5 wrote:
There was a gap of two months between surgery and chemotherapy for me as my oncologist was insistent that my surgical wound should heal first and the position of the wound, in the very fold underneath the breast made it slow to heal. I believe that 60 days is the normal target so you have plenty of time.
My understanding is that my zolendronic acid will be administered intravenously, like a chemo drug, rather than with an injection, though it will take only a few minutes.
Oct 12, 2018 12:12PM Rosiecat wrote:
I should have said FEC-T not C
Oct 12, 2018 12:14PM sylviaexmouthuk wrote:
Yes, it is true that zolendronic acid is by infusion. I have several friends who have had the treatment and they always say injection, but it is an infusion. As for the time between surgery and beginning chemotherapy, the time is very individual, but common sense dictates that you would not have it before your surgery has healed.
I had chemotherapy first, and I finished at the end of April and had the surgery on My 17th 2006, and then of course that surgery had to heal before I had radiotherapy.
You might be interested to know that in the latest guide to breast cancer that I mentioned, it says "Most chemotherapy regimens now include a taxane (third generation chemotherapy). If you have a BRCA mutation or a triple negative cancer, you will probably get a platinum based agent."
I do hope you are finding something nice and relaxing to do this weekend.
Thinking of you.
Oct 12, 2018 12:22PM Rosiecat wrote:
You'll probably have read my short post above by now. FEC T, not C.
I take 4mg of Candesartan daily.
Thank you for that very clear explanation of my chemotherapy. I'll just be happy when I finally see an Oncologist.
Have a good weekend.
Oct 12, 2018 12:44PM Rosiecat wrote:
Hello Sylvia and Susie,
It's not that I expect chemotherapy to begin right away, it's just that I'm not even in the appointments system and nobody seems to know if I will be seeing an Oncologist at all. It's all this additional stress caused by being in a situation where no-one communicates with anyone else, least of all with the patients.
Sylvia, I've let the house and garden go downhill for the last two weeks, so they have to be on the agenda for the weekend. I just need to remember how pleased I'll be when the house and garden look as though someone cares again.
Oct 12, 2018 04:54PM SusieW5 wrote:
Your hospital do seem a bit slapdash about organisation. Keep leaning on them. Have you an allocated Breast Nurse? If so, she should be easy to contact so keep nagging her and then let her nag everybody else.
It sounds as if you are having the same regime as me, only they called it FECIT at Charing Cross.
I've had nice easy radiotherapy sessions yesterday and today. Long may that continue. On the staff's advice I have been taking two paracetamol about 45 minutes beforehand. 10 down, 10 to go!
Oct 13, 2018 03:48AM Rosiecat wrote:
The hospital has run out of staff, money, equipment etc and now has only 2 medical Oncologists for breast cancer. My breast care nurse has told me to keep pestering the Oncology department. I guess that she either doesn't have time or feels intimidated.
I'm wondering about long term side effects with FEC T. Hair loss will be the least of it for me, though I'll be trying the cold cap - a friend described this as torture.
So pleased that radiotherapy is going smoothly and paracetamol beforehand seems to be working. The next ten sessions will fly by. Seems to take so long to get to the halfway mark and no time at a!l for the rest. Not to have the endless hospital appointments will be amazing.
Enjoy the weekend.
Oct 13, 2018 05:04AM SusieW5 wrote:
It is weird having to go to hospital every day. I keep thinking I'm just going to forget one day. One of the radiographers said it was more likely I would turn up the Monday after. You're right about how the first half seems longest. I even find that in my Pilates classes. I'm not sure if it's the paracetamol that's helping or the fact that the radiographers I had the last two days were very quick and efficient.
There's a very troubling story on the BBC News website today about breast nurses, or the lack thereof. https://www.bbc.co.uk/news/health-45837563
I tried the cold cap - for about five minutes. It instantly gave me a headache. Also it greatly increases the length of each chemo session as you have to give it time to cool down at the start then keep it on after the infusion has finished. I preferred just to be out of there.
Good weekend planned with theatre this afternoon and book club tomorrow.
Oct 13, 2018 05:23AM sylviaexmouthuk wrote:
I thought I would post to get in touch with all of the group again, because I have noticed a lot of our group has not been posting lately and that we have to remember we are a group.
I do hope all of you are doing well and that you will keep with us even if you have finished treatment. The threads are here for you to relate your experiences of your treatment and to say how you dealt with various aspects and give useful tips. We have to remember we are not doctors or experts and we are not supposed to give advice. Above all, we are here to support, comfort and help those going through treatment.
I want to say hello to the groups from different countries, so hello to Mary, Monica, and Val from the US, adagio, Moth and 53Nancy from Canada, Kath, Cocooncat and HelenLouise (Helen) from Australia, Susie, Flora and Rosiecat (Gill) from the UK. You all have an important role to play here.
Best wishes to Pam if you are still looking from time to time.
Ellen please let us know how your mum is doing.
To Hanieh, Marias and Gina, as well as Sarah, you are always in our thoughts.
It is Saturday morning here in Exmouth, Devon, and all is relatively calm after storm Callum, but Wales has been worst affected. It is all minor compared to what has happened in Florida.
I heard on the radio this morning that patients with secondary breast cancer (metastatic breast cancer) are not getting the dedicated breast care nurses to which they are entitled. The government has underfunded the NHS and it is overwhelmed with the number of patients. Remember, always, that the front line staff are dedicated people and do their very best under difficult circumstances.
Thinking of you all and sending best wishes.
Oct 13, 2018 09:11AM maryna8 wrote:
Gill and Susie
I thought when I was going through chemo that losing my hair was the least of my troubles, I had it shaved off when it first started falling. Not saying I enjoyed being bald, but with the side effects I got, it was at least easy to handle! Also husband was very ill at the time, so one less thing to think about. I had 2 nice wigs, my husband preferred them to my real hair!