Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia,
Just a quick note to catch up - went over to Israel, and my back started being very painful with numbness in my thigh, it got so bad that I ended up going to the ER at the local hospital, where they x-rayed me, took bloods and gave me pain meds. They also found I had shingles on the same side! Relief for about 8 hours, then back to the pain. Anyway, it was bad, and as a result of holding my body away from the pain in my back, my neck went into spasm. So I was ordered to bed for most of my stay there! Anyway, the whole idea was to spend time with my son, and we certainly did that. We didn't get to do what we'd planned, but we did get to the Dead Sea for a good soaking, and went out for sushi too! And we spent a lot of good time together. I got through the plane ride home on pain killers and a sleeping pill! When I got to my sister in Jhb, I was a wreck, and her daughter (a physician) checked me out and prescribed stronger pain meds. So we got a handle on the pain and I was able to spend time with my nieces and great nieces & nephews! When I got home I slept for 7 hours right through, which was so great, I'd been averaging 4 hours a night. I saw my physio a few times and do the exercises and it's so much better.
I've been off chemo for 2.5 months now and feel so much better for it!! I'm stronger, have more energy, have more appetite, fatigue is better etc. I'm having a ct scan on Monday, the last one at the end of August showed progression of the mets in my lungs. So it will be interesting to see what's happening there now. I've been working in at my old job in the afternoons for the last 10 days, which has been just lovely. It's been like having a normal life again, which I am so enjoying.
I hope you are well, I heard something about bad weather up your way? We're coming into summer, I love this time of year!!
Sorry I've been so sporadic, I appreciate you asking after me here!0 -
I've been missing you Carolben. Welcome back and as they say around here, gute Besserung and I have my fingers crossed for your CT scan!0 -
Carolben, I just logged on to post a question and saw your post. Is your scan this Monday, today or next Monday? I'll be thinking of you and looking forward to a great update from you.
Hi Sylvia and Everyone, I've come to you for your expert opinion on this question!! Ladies, do you know what the term animal protein is in reference to ... does it also include fish items? I'm asking because much literature that I have been reading lately has recommended limited animal protein, but I don't know if fish is included in that. Then I came across a nutritional article last week that recommended fish 4 times a week. So if fish was part of the term animal protein, where is everyone supposed to be getting their protein from .... in the same literature it recommends little to no dairy. Of course peanuts and beans have protein, but it really leaves a limited amount of low in fat items.
Just curious what you consider when you hear the word animal protein....I always thought it was excluding fish and that fish was called ... well... fish protein.
Have a great day ladies! xoxo0 -
Hi Sylvia
I am listening to the, 'Today' programme on RTE radio 1 and they have a very interesting piece about clinical trials and beast cancer and it is well worth listening to. It will be available as a podcast later today. The piece is about 90 minutes into a two hour program but I think podcasts can be fast forwarded.
I hope you didn't suffer too much with the big storm, it missed Northern Ireland completely and today is lovely and sunny. Portugal was warm but with some heavy rain.
Michael0 -
Hello Carolben,
I was so happy to see you had posted and to know that you are alright. I want to send you a big hug and to welcome you back to the thread .I have missed your posts.
What a lot you have been through, but you did get to spend time with your son.
I am sure you will be feeling better from that long rest from chemotherapy. It does our body no good, but we have to endure it. The rest will have allowed your immune system to grow stronger and for your fatigue to be a lot less, I do hope all will go well with the scan on Monday. Let us know how you get on.
It must feel good to be back at work. That will make you feel more normal and take your mind off things.
The storm has passed here and I am fine.
Fond thoughts,
Sylvia. xxxx0 -
Hell Debra,
Thank you for your post,
Fish is of course an animal protein, but it is considered a healthy food and one to be included in a healthy diet, especially fatty fish such as wild salmon and mackerel. You can however live healthily without it and without all animal products. Animal products are meat, poultry, dairy products, milk and cheese from other animals and eggs from other animals.
Some people say that a vegan diet that excludes all animal products is the healthiest diet and I tend to agree but I have not yet arrived at that stage, but I want to. You can get all the protein you need from nuts, seeds, beans and pulses. Soya beans are the best source of protein. I do not eat much in the way of animal protein, just some fish and prawns and a few eggs. I want to become a vegan or, as I prefer to call it, a non-animal product eater.
I hope this helps.
Fond thoughts,
Sylvia. xxxx0 -
Hello Michael
Thank you for your post and welcome back after your holiday in Portugal. I am sorry you had to have rain.
I was interested to know that you had been listening to the Today programme on RTE radio 1. I shall try to listen to the programme about clinical trials and breast cancer later today or tomorrow.
The storm has been pretty bad but Exmouth has got off lightly on the whole.
I was listening to the radio and someone was asking whether this latest storm was as bad as the one in 1987. There did not seem to be a response to this but the person being asked the question started talking about the storm of 2002, which I do not remember but I certainly remember the one in 1987 as I was at my mother's in London having come home for a visit from Canada. It was very bad and the next day we were driving to Exmouth to visit my brother. It has been very calm here today and we have had quite a bit of sunshine.
Best wishes.
Sylvia.0 -
Hello Susan
I was wondering how your radiotherapy is going. You do not mention it much so I wonder if you have finished.
Fond thoughts.
Sylvia xxxx0 -
Radiation is mighty fine, no problems yet. I have done 14 out of 36 so I have 22 more to go. It's just a daily hassle but I think of it as my job that I have to get to in the morning but thankfully work with all pleasant people and am free to go after 15 minutes! Hooray for that! I have been talking to whoever will chat with me in my not so perfect German. Men in my rads seem to have brain tumors and there is one little old man who is so cute that I can hardly stand it! Wife seems angry, boo to that....but he is just adorable and dealing with a relapse. I want him to come with me and be my grandfather!
I currently have a friend in the states with pancreatic cancer which typically is refusing to totally go away. I would just like to mention today that all cancer sucks, and I am one of the world's biggest haters of cancer (and animal abusers). I've lost too many friends already. Lung cancer took my mom, a non-smoker so I just basically hate it all. Hang tough ladies and fight like girls!0 -
Hello Michael
I just wanted to say that I have just listened to the programme that you mentioned and found it interesting. There certainly seem to be a lot of trials going on. What concerns me in everything to do with cancer is that there is little emphasis on cause or prevention. The emphasis is all about finding new drugs. I feel that we are getting more and more cancers because of our western lifestyle.
Having said that, I was really concerned when I read an article in the newspaper at the weekend about the incidence of breast cancer in African countries and how the women turn up at hospitals when their cancers have reached stage 4 and how through societal ignorance there is a sense of shame.
Last week I was speaking to a woman whom I know and who had a bilateral prophylactic mastectomy some time ago because her sister had died of breast cancer at the age of 41 and was BRCA2 positive. She and her three brothers have recently got themselves tested genetically and she is BRCA2 + as are two of the brothers. She and those two brothers all have the same blood type. The other brother has a different blood type and is negative for the BRCA genes. This woman, who must be about 50, told me she is now going to have prophylactic surgery to remove the ovaries through keyhole surgery. Because of the faulty BRCA gene she is at risk of ovarian cancer and is having the ovaries removed in the hope of preventing this. She did not know what type of breast cancer her sister died of or the receptor status. She just said it was very aggressive. I think the sister may have died some time ago so the receptor status might have been TNBC or triple positive. We had an interesting discussion about all this and the connection between breast cancer and prostate cancer.
I hope you are settled back home and are nice and cosy for autumn and winter.
Keep well.
Sylvia.0 -
Hi Debra, scan is next week Mon, 4th Nov. I get them to e-mail me the results when they mail them to my onc, so I can go into the appointment with my onc knowing what we're dealing with. I find when he gives me bad news at the beginning of an appointment, it's hard to take anything else in!
Hi Susan! Glad rads are going easy - hope it continues so. I burnt and peeled a bit after the first 20 or so, but had very little discomfort. So much easier than chemo. Sorry about your friend with pancreatic cancer, that's a bitch! I have a big button that says "Cancer sucks" that I wear from time to time.
Thanks for the warm welcome, Sylvia, and wishes for the scan. It was nice to work for a while, and nice to earn a bit of money too!
The thing about this disease too is that we make amazing new friends who also have cancer and some of them don't do well, and it's painful to watch. But it helps so much talking to people who have walked or are walking this journey, it's just one of those things - until you get it, you really have no idea what it's like!
It's rainy and a bit chilly here today, I think I'm going to put my electric blanket on and climb into bed for an hour or two. My back has been sore again today, if I need an excuse (which I don't!). I'm reading Ken Follet's "Fall of Giants" which is a HUGE book and will take me about 3 months to finish, I'm sure!!0 -
Hi everyone. Had my hair done today and I am glad I did as I have been agonising over it for a couple of weeks now. My lovely hairdresser did it gradually for me so it wasn't too difficult for me. We started with a number 4 then went down to a 3. I stopped there as I didn't think I could face a 1. It may well shed a bit more but she has offered to come round to my house and shave it completely if needed. She is so lovely! I also had my wig styled and am really pleased with it as it is very like my real hair, just better! I have put some pictures on Facebook for those who are in our group on there. Also, my beautiful, sweet, 12 year old daughter took some pictures of BOTH of us wearing bandanas and put them on Facebook, in moral support!0 -
Hi, I wonder if anyone can give me some advice? I am almost 2 years out from diagnosis, TNBC, 1.2 cm tumour removed by WLE,chemo FEC X 6( supposed to have TC X4 but had an allergic reaction to docetaxol) no nodes and no vascular invasion, radiotherapy X 20. I have been doing really well, exercising and eating healthily, I'm feeling really positive and now I have just found a lump in my neck. It's only small but it's on the same side as the cancer and has freaked me out. I don't have a cold, sore throat or anything. Has this happened to anyone else?0 -
Hero - I personally have never felt another lump yet, although I do check myself very regularly. I would get an appointment to see a doctor and get things checked out just to be sure.0 -
I agree with adagio. Any lump needs to be looked at. Which part of your neck s it?
Anne0 -
Hello Carolben
Thank you for your post. We shall all be thinking of you on Monday November 4th and hoping that all will go well. I think it is a good idea to get the results by e-mail so that you have a chance to absorb them before you go to an appointment. I think we all probably know the blanking of the brain experience when we receive unwelcome news.
I agree that with cancer only those that have been through it can really appreciate what a fellow sufferer is going through.
I have heard about Ken Follet's book and how huge it is. Enjoy it as you read it tucked up in your warm blanket.
Fond thoughts.
Sylvia xxxx0 -
Hello apandy (Anne)
Thank you for your post. I was glad to know that you have a good hairdresser to deal with your hair. Losing your hair through this treatment is very traumatic. I just left mine to fall out by itself, but it was pretty messy. I did not have it shaved off completely like some women do, as I thought it would damage the roots more. I was never completely bald and had some stubble and a little bit of hair at the back. I wore my wig almost immediately after the first treatment and really loved it.
What a lovely gesture from your 12 year old daughter to put some pictures on your Facebook group of both of you wearing bandannas. You could not ask for better support.
How are you feeling today? When is your next date for chemotherapy?
Thinking of you.
Sylvia xxxx0 -
Hello Hero1967
Thank you for your post and welcome to our thread.
I was sorry to hear that you had an allergic reaction to docetaxel (Taxotere) and so did not complete. Did you have just one dose of this drug?
I was glad to hear that you have been doing really well and exercising and eating healthily.
I was sorry to read that you have found a lump in your neck and I must echo adagio's advice to get this looked at quickly for peace of mind. You need to get in touch with your oncologist so that she can have a look at the lymph nodes (glands) in your neck. It might be an infection. I know that when I have my check ups the oncologist always feels around the neck.
Thinking of you and wishing you well. Please let us know how you get on.
Sylvia xxxx0 -
Hello everyone
I hope you are all having a positive week.
To Gill and Sandra, I hope you are both recovering well from your chemotherapy treatments and that you are able to be carrying on as normal as possible.
To adagio, thank you for all your effort on our thread. I was wondering if you had the results of your mammogram.
To InspiredbyDolce (Debra), thank you for all your effort on the thread. Are you thinking of giving up fish? I was thinking about your question about fish and thought you might like the following link.
http://en.wikipedia.org/wiki/Pescetarianism
I found the link amusing because I knew the word pescatorian or pescatarian meaning someone who eats fish, because it is a mixture of the Latin word for fish and the word vegetarian. No matter what is said, I do not think a person who eats fish or seafood can say they are vegetarians. Of course, we also have lacto vegetarians (those who eat dairy products), and ovo vegetarians (those who eat eggs). They eat these products in addition to the normal vegetarian diet of fruit, vegetables, beans, pulses, grains, nuts and seeds.
In the link I have posted it also says that vegetarians eat the by-products of insects, such as honey, carmine and shellac. I would not eat honey because it is sugar. As for carmine and shellac, I must look them up.
I think carmine is a red colouring that we used to know in this country as cochineal. I do not think I would want that.
I have just looked up shellac and do not like the sound of it. It comes from the lac bug.
How do you like the sound of vegequarian = a vegetarian who eats fish? To use one of your nice American words – baloney!
I hope you are well.
Fond thoughts.
Sylvia xxxx0 -
Hello everyone again
To linali (Lindsay), did you see the post from Mumtobe? I hope you did. It was good to hear from her again. Do you ever hear from BernieEllen? She might be on one of the Facebook groups. I remember she asked me to join one of them in the past.
To Michael, how are things going? There was more news on the television the other day about breakthroughs with breast cancer, this time from the University of Nottingham, UK. They were talking about seven different types of protein, but it did not seem new to me. Have you converted to the vegan way of life yet?
To Peter and Liz, how are things going in Norfolk? Was the storm very bad?
To sam52, I hope all is well. PM me if you need.
To Sam_UK, I hope all is well, that you had your surgery and that it was successful.
Best wishes to everyone. Will you be out trick or treating? It was a big thing in Canada when I lived there.
Happy Halloween. Do not go onto sugar overdrive!!!
Sylvia
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Hello everyone yet again
I was looking in the cancer section of Waterstones yesterday to see whether there were any new cancer books. I saw the following two are recent and look interesting. I was wondering whether any of you have read either of them? They are:
The Cancer Survivors Club by Chris Geiger 2012 and 4th edition 2013.
You need humour with a tumour – reflections on a journey with cancer. by Annemarie James-Thomas 2013.
I would be interested to have any comments if you have read them.
I saw that The Emperor of All Maladies and the Professor Jane Plant books are still going strong.
That is all for now.
Thinking of you all.
Sylvia0 -
Hi all, thank you for the replies. I have made my neck sore from all the prodding and poking I've done so I had better leave it alone for the time being. I should be going for my yearly checkup in December. I had a MRI scan last year as well as a mammo and hope to have another one this year, however my lovely breast surgeon retired in September and I don't know who I will be seeing this time and whether they will allow me another mri. The lump is very small and is quite deep and about 2 inches below my left ear. If it grows I shall go and see the doctor before my hospital appointment.
I wasn't able to finish my first dose of docetaxol, infact only a tiny fraction of the infusion went in. I went bright red, my heart starting going hell for leather and I couldn't breathe, I then had what felt like an almighty kick in my back, apparently the adrenal glands going into action. All in all not very pleasant. I have always been upset about not having had a taxane even though I know some of the side effects like neuropathy can be really awful. I feel as if I haven't had the best treatment for TNBC. Have many of you been in the same boat?0 -
Hi Hero,
I'm not bossy (well I try with the husband to not much avail) and I for sure do not mean to offend, but my suggestion on this lump in your neck is that it should have been checked yesterday. Having had a bout of TNBC you know how aggressive this nasty stuff can be so I would not sit back and let anything grow another month just in case it's BC related. I hope it's nothing but please go now.0 -
Well I phoned my oncologist today and she is arranging an ultrasound for me in the next week or so. She has told me not to worry too much as it's probably nothing but best to get it checked out. Thanks for giving me all the advice, it was the kick up the backside I needed. You really can't be too careful with TNBC. I'll let you know how I get on.xx0 -
Hello Hero1967
I was glad to read that you had phoned your oncologist. It was the sensible thing to do. I do hope you will get the ultrasound quickly and that you will have good news. It is always prudent to get anything checked out quickly. You cannot be too careful where cancer in general is concerned. We hope to hear from you soon with good news.
Take care.
Sylvia xxxx0 -
Hello everyone
It is wet and windy here in Exmouth today. I noticed that the posts have been very quiet so I hope everything is alright with all of you. I do hope that those of you going through chemotherapy and radiotherapy are doing well and that you will be in touch to let us know your next dates for treatment.
I have just finished reading a very up to date book on breast cancer that I have found very interesting and useful. The title is “Breast Cancer Your Treatment Choices” by Dr Terry Priestman, Sheldon Press 2013, £8.99. It is in the series Overcoming Common Problems. It is easy to read and covers everything you need to know about dealing with your breast cancer. It is written in very clear language and if it were me going through treatment now, I would want to read it so that I am an informed patient.
The main headings of the chapters are as follows.
1. Key facts about breast cancer.
2. Treatment for breast cancer.
3. How can breast cancer be cured.
4. Surgery: your first treatment choice.
5. Radiotherapy.
6. Drug treatment: who needs it?
7. Chemotherapy: cytotoxic drugs.
8. Hormone therapy.
9. Targeted therapy.
10. Complementary and alternative treatments.
11. If breast cancer comes back: advanced breast cancer.
Dr Priestman is Consultant Oncologist and Honorary Senior Clinical Lecturer at the University of Birmingham (UK).
I think this book will help you all and is much better than searching through all the confusing information on the internet. I liked it because it was clear and precise and emphasised the fact that women should take an active part in their cancer treatment and make their own choices.
Wishing you all a good week.
Sylvia.0 -
Hello everyone again
Another very good little book is one that I read a few years ago, but that I am rereading and using as a reference book. It is entitled Understanding Breast Cancer by Professor Mike Dixon in the Family Doctor Books and is published in association with the British Medical Association. It is £4.95 and you can find it in bookshops and pharmacies. It is illustrated and will take you through every step of your breast cancer journey. The latest edition is 2010 and so is up to date.
Thinking of you all.
Sylvia0 -
Silence on this board is a good thing, but here goes. I have just now, halfway through my rads broken out in a big, itchy rash on the inside upper quadrant of my breast. So last night I'm half asleep and trying unsuccessfully not to mess with the area and felt a LUMP! I considered ignoring it for 10-15 seconds. Talked to my RO this morning, she felt it and said a quiet "oh ". She thinks it cannot be anything but then who knows. Ultrasound on Thursday. The lump is very near the surface and small but SIGH. SIGH. SIGH.0 -
Had an awful day at the hospital yesterday, on top of my boiler packing in on Sunday night. I have been without hot water or central heating since.
I had just gone for my blood tests and oncology appointment, prior to cycle 2 of chemo, taking place on Wednesday. I was there over six hours and the parking charges amounted to £20! I have since established, through PALS, the local patient liaison service, that you can get a £10 weekly pass for parking at St George's, but this is not widely advertised and I didn't know about it. I persuaded them to put a big notice up in the chemo unit so all patients can see it.
In summary, the oncologist was worried, not just about a cough which I have had for over a week now, but mostly because she said I was breathless. So I ended up going for a chest X-ray and then a CT scan and she was talking about postponing Wednesday's chemo. I feel like I spent the whole day traipsing from one part of the hospital to another. But to top it all, I had to have a cannula put in for the CT scan (which was to check for blood clots on my lung) and it really hurt as it was a particularly big needle. But the worst bit was when a female doctor appeared and announced that the cannula was in the wrong place and should be inside my elbow, not on my wrist, so I had to have the whole thing done all over again! I was already really tired as I had had a late night on Sunday, trying to see if I could get the boiler to work, and a rotten headache, so I was miserable. Also I hate CT scans and that weird floaty sensation when they flush that hot feeling liquid through your veins. It made me feel like I was going to pass out. Luckily the X-ray and scan revealed all was well so the chemo can go ahead, even with the cough.
Anyway, I didn't get home until 6.30 pm as I was caught in the rush hour. But my sweet daughter had started the dinner and also the heating engineer rang to say he was coming today, so things started to look up. Sorry if this sounds like a pity party but it was a bit grim. The engineer turned up about ten minutes ago and, with any luck, I should soon be able to have a nice hot bath soon, and switch off the fan heater. I still feel very tired after yesterday's exertions.
Regards to all and I hope your next hospital visits are less eventful!
Anne x0 -
Hello Susan
Thank you for your post. I was sorry to read that halfway through your radiotherapy treatment you have broken out in a big itchy rash on your breast. I do hope that the lump your felt in that area does not turn out to be a problem. I can imagine how shocked you were to feel a lump. You were right to take prompt action and contact your oncologist. It is good that your oncologist has also acted promptly. I shall be thinking of you on Thursday and hoping all goes well with the ultrasound.
Please let us know how you get on. I am sure we shall all be thinking of you and sending our best wishes your way.
Fond thoughts.
Sylvia xxxx0
