Calling all triple negative breast cancer patients in the UK
Comments
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Hi Susie,
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.
Gill X
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Hello Gill,
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.
Love.
Sylvia xxxx
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Hello adagio,
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.
Love.
Sylvia xxxx
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Hello Mary,
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.
Sylvia xxxx
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Hello Gill,
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.
Susie x
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Hello all,
I should have said FEC-T not C
Gill X
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Hello Gill,
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.
Love.
Sylvia xxxx
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Hello Sylvia,
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.
Gill X
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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.
Love,
Gill X
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Hello, Gill
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!
Susie x
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Hello Susie,
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.
Gill X
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Hello, Gill
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.
Susie x
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Hello everyone,
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.
Sylvia xxxx
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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!
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Hi Mary,
I'm not at all bothered about the hair loss and am not sure why people fixate on this -- maybe because it's something everyone associates so much with cancer. I love my wig and intend to carry on wearing it when my hair grows back, which it is starting to do.
Susie
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Hello Gill,
I can understand your concern about hair loss, but remember it will grow back and you can wear a nice wig.
I did not have the ice cap but I did ask my oncologist about it and she said she was not in favour of it because of the risk of infection. I think it is offered quite a bit now but some patients say it is quite an ordeal and of course it does lengthen the time that you spend in the Oncology ward. It comes down to a personal choice.
I loved my wig and did not feel at all awkward in it. I could not have gone through treatment with no covering on my head and I did not like the idea of scarves or turbans. As I was going through treatment in autumn and winter, I did find a very smart ready made turban to wear at night when it got a bit draughty!
You will get through all of this.
Love.
Sylvia xxxx
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Hello Sylvia, Susie and Mary,
I tend to agree that hair loss will be the least of my worries and I'm reassured by you all being pleased with your wigs. My hair is shoulder length and very thick. Washing, conditioning and blow drying takes an age and I won't miss having to do that one bit. I'll try the cold cap, but doubt if I'll keep it up as I don't know anyone who has. I hadn't realised there was a risk of infection.
The Oncologist at Guy's wants me to have chemotherapy weekly, ( lower dose), rather than three weekly. According to some reports this is just as effective, but neuropathy is less likely to be as serious. Not sure if this applies to all side effects though.
Take care everyone.
Gill X
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I was struck by how few people in the Chemo Day Unit were using the cold cap, although the staff seemed keen to suggest it. It was the occasional younger person who probably cared more about her appearance.
My hairdresser retired at Easter, as it happens, which I thought tiresome at the time, but I haven't needed one for ages. Also don't need to bother shampooing!
Susie
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Hello Susie,
I'll try anything once, however, my hairdresser is going to do a slightly fuller version of a pixie cut as soon as I know when chemotherapy will begin. I'll go and try a few wigs on once my hair is short. Actually looking forward to that part. Real hair for going out, NHS for around the house and, like Sylvia, a turban for sleeping in.
I've known my hairdresser and colourist for thirty years so we've become good friends. Agree that it's a nuisance when a favourite hairdresser retires. My foil highlights, cut and blowdry takes three hours and costs a fortune, so the time and money saved will be used for theatre, travel, anything fun, as soon as I feel well enough after chemotherapy.
Gill X
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Hello CocoonCat,
I wonder if being younger helps with tolerance? I'm going to try it, but if most of my hair falls out, like you, I'll give in gracefully. Hair loss, to many of us, is the least of our worries, while to others it's absolutely devastating. As you say, nothing about this wretched disease is easy.
It's always good to hear from you. This thread is so supportive and full of useful information. I find other peoples' experience with the practical issues around treatment and coping with the side effects of chemotherapy/radiotherapy invaluable.
Hope your treatment is going well and you can begin to look forward again. I'm trying to be positive, but the reality seems to be that some days are better than others and I guess that going through this whole thing twice is particularly difficult. Nonetheless, we are both going to get through this CocoonCat.
Sending positive thoughts,
Gill X
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Hello Gill, Susie and CocoonCat,
I tried cold capping when I had my 1st dose of AC but before I get to the 2nd dose most of my hair fell off. So I shave it all instead. It didn't work well with me.
After buzzing my hair, I used mostly turban when I go out and wear nothing else at home as the weather here in Singapore is very warm most of the time.
After finishing my chemo in May, I visited Philippines where I am from and the weather that time was even warmer. I was using my wig for a few days there but when I saw that my hair is coming in, I decide to ditch the wig and nobody even bothered to ask about my hairdo.
After almost 2 years of finishing my chemo, I decided to keep my hair short and I always get complimented for it from stranger who never knew what I went through. I just smile back to every compliment that I received.
I enjoy now the freedom of not worrying about having a bad hair day.
I am sending healing thoughts to those still going through treatment. May you find strength to get through the struggles.
Hi to you Sylvia, Mary, Gina, Amanda & Pam
Best regards,
Lou
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Hi Lou,
I've always had shoulder length hair and am beginning to get curious about what I'd look like with much shorter hair. Won't miss all the washing and blow drying, that's for sure. The UK is cold and damp throughout Autumn and Winter, so a wig will be essential. Probably drive me mad in a hot climate like yours though.
It's so good to hear from someone who's been through cancer and chemotherapy and is now enjoying life again. So many on this thread are doing just that. I want to get on with chemo and begin to look forward to the future too. I have so much I want to do and see.
Thank you for sending us healing thoughts.
Take good care of yourself.
Gill X
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Hello Lou,
It was nice to see you back on he thread and giving support to those going through treatment. I think it makes a big difference to hear from those who have completed treatment and are leading normal lives.
I do not know what has happened to Gina, who was dealing with recurrence and also having trouble with the internet. I just hope she is alright.
Amanda stopped posting sometime ago after she had finished treatment. Pam posted to say she was going to take a break. Her work keeps her very busy.
Pop in to see us whenever you can and keep well.
Love.
Sylvia xxxx
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Hello Gill,
With reference to your chemotherapy, I thought I should say that many of the women on the threads do say that they found weekly chemotherapy easier to deal with than every three weeks. I was not given a choice, but still got through it with every three weeks with just fatigue.
I found that my bald head could get quite dry and I used to wash it regularly. I rubbed ordinary avocado oil on it before I washed it and then used a tiny amount of Johnson's Baby Shampoo to keep it clean. I found it made me feel refreshed.
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
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Hello CocoonCat, HelenLouise and Susie,
I am just popping in to say I hope all is going well with treatment.
Love.
Sylvia xxxx
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Hello Flora,
I do hope all continues well with your mum.
I am wondering what has happened to Ellen (Ellewebs) who was posting for her elderly mum.
Love.
Sylvia xxxx
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Thanks Sylvia
All is well so far in round three of Xeloda for me. Only started today
. Burns are subsiding. You really are a gem!
Ihope all is well for you and yours X
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Hello Helenlouise,
Thank you for your post. I was glad to know all is well and I hope you continue to cope with Xeloda (capecitabine) as you start round three.
I was glad to know the skin is healing.
Thank you for mentioning in one of your posts that Xeloda (capecitabine) now appears to be standard with TNBC when neo-adjuvant chemotherapy has not brought a complete pathological response.
You will get through this.
Love.
Sylvia xxxx
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Hello everyone.
I'm feeling a little ashamed of myself this afternoon.
For anyone new to the thread, I've been unable get any information from my breast care nurse or the Oncology Department regarding whether I would be considerer for chemotherapy. The surgeon originally told me that under National Guidelines, a mastectomy and clear lymph nodes meant that I would not require further treatment. When I clearly did.
Today, I rang the breast care nurse yet again and she didn't know any more than I did and couldn't push the Oncology Department for answers. That's when I lost my temper.. I do feel very bad, as I know the hospital staff do their best. In very difficult circumstances. The hospital simply cannot cope with paying off the multi billion pound loan for the building. Both patients and staff are suffering.
Just had a phone call to offer me a cancellation appointment at 10.00 tomorrow. So, I'm over this wall of silence.and have the opportunity to put my case to an Oncologist. I also have to apologise to the breast care nurse.
Special thank you to Flora as without her recommending Dr. Harries at Guy's to me, I would have had a very difficult job in pushing my case forward. Also Flora, I hope that you and your mother are now clearer and more confident on future treatment.
Love,
Gill X
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Hello, Gill,
I think you do have to lose your temper sometimes to get anything done. Maybe that appointment miraculously appeared because you did. Hope it goes well anyway.
Susie x
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