Calling all triple negative breast cancer patients in the UK
Comments
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Hello all,
I was glad to see that you are busy discussing turmeric and pepper. I do not take supplements, but I regularly buy tubs of organic hummous and I mix into it generous helpings of turmeric and pepper. I then put a generous serving of it on whatever I am having for my evening meal.
Mary, have you read link 24 from Michael? What do you think?
Sending you all best wishes.
Sylvia xxxx
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Mary, Kathe any side effects or tips on taking the tumeric/black pepper extract supplement?
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I have not heard of any side effects of Turmeric. I take one capsule daily - turmeric is anti-inflammatory, so I think that is why it is recommended for cancer since there is some research that suggests that one of the causes of cancer may be due to a chronic low inflammatory state in the body.
Kath - which part of Australia do you live? You would probably find turmeric in any health food store - or buy it on line from a reputable source. I am looking forward to my multi-city visit to Sydney, Perth, Brisbane, Port Douglas, Gold Coast, Adelaide, Melbourne plus many wonderful places in between the cities. Wow - when I list all of those, I feel exhausted - but we do have lots of retreat days in beatuiful places interspersed between the cities where we will simply relax.
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hi I live in a small city near NSW border but have done some extensive travel. Went to Vancouver a couple of years ago. Very pretty place. My just recovering after a stint in hospital after my first dose of AC. Can't have newblaster until I prove neuyraphils are low so was going to have it on day 1 of my second cycle. Unfortunately I ended up with a febrile neutropenia in hospital and IV antibiotics. Hopefully they will discharge me today because temp down and I'm due for my 2nd ac on frida
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Hi, Valstim,
There are no adverse side effects as far as I can tell, from taking the turmeric. It is a food spice, so I would think the only problem would be if one is allergic to it. It is supposed to be very good for people who have/had cancer, so I figure I will try anything within reason!
I hope your skin has cleared up from doing the radiation.
Here our weather has suddenly turned for the better, the days are beautiful and mild, and the nights feel like autumn. It has been a long, hot, steamy summer but I think it's winding down!
Talk soon, Mary
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Hi, Kath,
I know what you are going through, the same thing happened to me after my first chemo dose. I was given the AC and Taxotere, and ended up in the hospital on antibiotics for 4 days. Felt weak as a kitten until those blood counts came back up. So then after that they only gave me the AC, and then gave me the Taxotere by itself after that. Ugh, do not want to feel like that again!
I hope you get to go home, and recover your strength before your next go-round. Take care of yourself, and eat as well as you can. Will they adjust your dose, I suppose you will find that out soon enough.
Talk soon, Mary
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Hi, Sylvia,
I did look at Michael's link, I didn't get a whole lot out of it. I got a couple of paragraphs about a plant they are studying for its' anti-inflammatory, anti-acitinic properties, he mentioned he saw a program on BBC that was very interesting, was the show about this plant study? The article did not mention cancer, does this study pertain to future use with cancer drugs?
Your hummous sounds very good with the turmeric, I have tried different brands of the hummous in tubs, most of it is so garlicky I don't like it. I do like fresh garlic, but a little goes a long way with me. I guess I could try making my own sometime when I feel like a culinary adventuress.
I mentioned above about our weather change. Suddenly autumn is in the air, the summer has seemed so long and hot, and presto! now it seems like it flew by. At any rate, it is definitely pleasant outside. And by the way, your flower pictures are beautiful! They must love the cool, rainy weather you have had.
In reference to the article about the NHS refusing to fund the cancer drug, that is indeed a sad state of affairs. What good are the drugs if we can't have them? I had to take a very expensive drug last year for an issue unrelated to cancer, I was told that in third-world countries the drug is given either very cheaply or free partly because the cost is added to what we in the West pay for the drug. What do you think will happen with the NHS? Is it because not enough people are paying into the system to support the cost? The money has to come from somewhere.
Our healthcare/insurance system is going through all kinds of transition too, partly government-run, partly private and having the same problem. Too many accessing the free part, hospitals charging exorbitant fees, and not enough citizens paying to fund the "free" care. As for me, I pay into the government system through my taxes, and also have to pay for my private insurance. It's nuts when you think about it. In a little over a year I will be on Medicare, our government-run program for people over 65. But I will still have to have what is called a supplement, which I will pay for because Medicare doesn't cover everything. Bear in mind that all my life while I was working I paid for Medicare, but of course the government spent all that on other things and now they say the program is going broke. Probably the same thing as the NHS. Meanwhile the government officials get the best of care for nothing, as I said before, it's nuts!
Okay, guess I will try to think pleasant thoughts again
and cross each bridge as I come to it.
Talk to you soon,
Mary
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Sending hugs to you Kathe. My body revolted with my first AC dose. I was in the hospital for 6 days, but afterwards sort of sailed through chemo. Minimal side effects.
Thanks Mary. My skin is healing, and fast. Still a couple of horrible spots but they are on the up side.
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Hello adagio,
I just wanted to say hello.
I read through the list of places you are going to visit and I felt as though I had been around the world! I do hope you will enjoy it all and that you will find a bit of time to post in to let us know how things are going.
Raymond and I were talking about Canada today and wondering how much the parts we lived in would have changed. It is now 23 years since we came back to the UK, so we think much will have changed. We still keep in touch with friends in Ottawa and from what they say we would not recognise a lot of it.
Thinking of you and wishing you all the best.
Sylvia xxxx
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Hello Kath,
I was sorry to read that you have been having such a rough time with your chemotherapy treatment. I sincerely hope you will get out of hospital today and that you will be well enough to continue with your chemotherapy on Friday. Are you having weekly doses of chemotherapy? So many women on this thread have said they found weekly doses so much easier to cope with.
Take it easy and let us know how things progress. Remember to try to eat well, take your medication that you are given for the first few days, drink plenty of water and rest when you feel the need. Keep away from crowded places and anyone with colds or other infections. Remember, your immune system is weak and not able to fight back.
Sending fond thoughts your way.
Sylvia xxxx
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Hello Valstim52,
I was just wondering how many more sessions of radiotherapy you have. Hang in there.
Sending you fond thoughts from the UK.
Sylvia xxxx
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Hello Mary,
Thank you for your post. Like you, I did not get a whole lot out of Michael's latest link, but it is really about yet another possible drug for cancer treatment. That is fine, but not much use if they are too expensive and cannot be provided on health systems. I must have missed what Michael said about a BBC programme. I cannot remember what it was about.
It is true about the hummous and the garlic factor. I always give my teeth a good clean after eating it. Apparently you need to eat parsley after eating garlic to get rid of the bad breath, or at least that is what I have read in the past.
You must be glad to be rid of the very hot weather. Autumn is also showing its face here. At the local garden centre this morning I noticed that all the bulbs were on display, as were cyclamen and pansies. How quickly the year goes!
Thank you for your kind words about the flowers. It has been difficult to keep them nice this year because of lack of rain. Recently we had a good downpour, so everything looks refreshed.
I do not feel very optimistic about our National Health System. It was brought in in 1948 by a Labour Government and it has always been our pride and joy in this country. However, it was brought in when our population was so much smaller and when the kind of care patients needed was much more simple and uncomplicated.
I think it is now being abused on all sides. People here only see it as "free" and not as free at the point of use and paid through our taxes. I think people go to the doctors for every little thing and want everything on prescription. I think the doctors over-prescribe and do not worry about the cost to the NHS. I think there is abuse in hospitals as well, with all the fancy machinery they now have. The NHS is treating a huge population, including all those coming here from the EU who have not paid into the system. It is probably underfunded but money could be saved if there was not so much abuse.
The other day when I went to see the podiatrist in Budleigh Salterton, a small seaside town just five miles from here, I picked up the newsletter that is run by patients, and was impressed with what I read. The surgery there was given top marks for the way it was being run. I read all the pharmaceutical products that could be bought at the pharmacy and which are being given free on prescription by going to the doctors. It said that just eliminating these free drugs and making patients get them at the pharmacy would result in huge savings. It also had a page about all the minor ailments that you could self treat at home instead of running to the doctors.
I think that people should take better care of themselves and be more responsible citizens. We have a huge problem here with obesity, especially in young children, and nobody seems to give a damn. There is such do-as-you-like attitude to everything here. I do not know how it will be resolved.
I chuckled at what you said about what is going on with your medical system. It is the same problem as over here. People have to understand that there is no such thing as a free lunch. The politicians do alright in just about everything and then get good pensions. I am just wondering when they are going to show up for work. They seem to be on holiday for ever. They have been on holiday for nearly two months. They will come back in early September for a week and then they will all have their conferences and so be off again until early October.
There has been no progress on Brexit and I think everything is being done to undo the will of the people in their referendum.
I have been watching the leadership debates with the Labour Party. They make me angry because we should not be having a leadership contest. I have watched four so far and cannot believe that there are five more to go! I am not a fan of the upstart Owen Smith and still support Jeremy Corbyn. He is a decent, caring, devoted and 100% informed person. He is getting a lot of applause, me included! I have no idea what is going to happen, but am disgusted that the NEC is not allowing 130,000 Labour members to vote, even though they have paid £25 each and were led to believe they could vote. I hope the NEC has to give them their money back and then gets sacked! It must be about £3,000,000.
I am still following your own Presidential election, and see that Donald Trump seems to be losing favour. I suppose Hillary Clinton will win but I do not like her.
I think that is about all for today. It is always a pleasure to talk to you. By the way, has coconut craze hit the US? It seems that it everywhere here, in some shape or form.
Best wishes.
Sylvia xxxx
what has happened to our Hanieh? She has not posted for a long time, not has PeterandLiz.
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HI Sylvia. I am all done. Just healing from the burns. I head to Sint Maarten for a week on thiursday. Though its warm we love going there and need a break from all the treatment related things.
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Hi
I was diagnosed with triple negative breast cancer April 2016 age 33. Just finishing FEC-T chemo before mastectomy and then radiotherapy.
I'm happy to chat more if there are more people out there with recent diagnosis!
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Foxlady, thank you for posting and sharing your experience. Hang in there, and please keep us posted on how things go with your treatments. How have you managed FEC-T?
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And am now starting to eat a little better. Next chemo due Friday and out of hospital today. Thought I was doing well but that horrible gut wrenching fear has grabbed me again! 5 days in isolation all I did was think! Does this fear slow down a little I know it never goes but it seems to be taking ova my life
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Hello Foxylady,
I am posting to say welcome to our thread. We know that none of us wants to be here, but you will find a lot of help and support here. We can all relate to you. When we get this diagnosis of breast cancer, it changes all of our lives and for all of us there is this before and after life. On this thread we all belong to that diagnosis of triple negative breast cancer and we are all proof that we can get through this. We have people from different parts of the world and going through different parts of the cancer journey, from diagnosis to surgery, chemotherapy, radiotherapy, reconstruction, post treatment check ups and moving on.
As a fellow Brit, I would like to welcome you into our group.
Like you, I had my six months of chemotherapy before surgery for a mastectomy. How did you cope with your chemotherapy? Did you have any very bad experiences? Did you have weekly, two-weekly or three-weekly doses? I had EC-T. Do you know whether there was any particular reason why you had the fluorouracil (F)? How are you feeling right now?
We have Kath in Australia who has had her first treatment with chemotherapy and has been having a bad time. Lilyp6 in the US, who is very young like you, is also going through chemotherapy, I think. We have not had an update from her recently. Valstim has just finished radiotherapy. I am sure they will all want to talk to you.
Take care and give yourself time to recover from your chemotherapy treatment.
Sending you fond thoughts.
Sylvia xxxx
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Hello Valstim52,
I was so glad to read that you have finished your radiotherapy and that your burns are healing. You are right to treat yourself to a break and I hope you have a great time. Where exactly is Saint Maarten?
Fond greetings from the UK.
Sylvia xxxx
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Hello Kath,
I was glad to read that you are now starting to eat a little better. It is important to do this to keep your strength up.
I hope you will feel better once you get out of the hospital today and I hope your next chemotherapy session on Friday August 26th will be a better experience for you. Keep telling yourself you are going to get through this and do not let the five days in isolation at the hospital get the better of you. Those five days must have been difficult and lonely, but they were there to keep you away from germs.
Do you have someone to go with you for the chemotherapy? It is a long day and you need someone to be with you, to sit and chat a little while the drip does its work.
I can assure you that the fear will get better as you proceed through your treatment. Try to think positive thoughts and tell yourself that fear will serve no purpose. It is just like worry. You need positive thoughts and support to help you keep those positive thoughts.
Come to us as much as you like and we shall try to keep you positive.
Sending you my very best wishes.
Sylvia xxxx
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Hello everyone
I was diagnosed with TNBC in on 8th July and started neoadjuvant chemo on 28th July. I'm 56 and this came out of nowhere, hitting me like a steam train. I really really struggled in the days following diagnosis and before getting a treatment plan as I felt so very frightened and uncertain about the future. I have read many of the posts on this thread and found them supportive and uplifting, so thank you to all of you who have contributed, and in particular, thank you Sylvia for keeping this going, particularly in the early days when there appeared to be fewer posts.
I will try to figure out how the whole thing works in terms of posting your diagnosis etc at the bottom of the thread but this may take me a while! I've just had my second round of EC and the only real problems seem to have been from the GCSF which has given me horrible muscle pain which I guess will wear off in time. I'm to have 9 weeks of taxol / carboplatin after my next EC then surgery and rads so still a long way to go but I'm hopeful that this will then sort me out and I can get my life back onto its rightful track!
I live in North west England - about 20 miles from Manchester and having care from the Christie hosptial which has been brilliant so far. If there is anyone nearby who would like to meet up for a chat that would be great!
Chris
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Hello 4everstrong in Paris, France,
We have not heard from you in a while, so I was wondering how things are going. I know that you were going through radiotherapy and I wondered whether you had finished, how you had coped and how you were feeling.
Best wishes.
Sylvia xxxx
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Hello Clauclau (Claudia),
We have not heard from you in a while and I was wondering where you are with your treatment. I remember you were having surgery late June. What has happened since then? I see from your details that it is your birthday on August 25th 2016, which is next Thursday, so Happy Birthday for that day.
Please get in touch, let us know how you are and bring us up to date with what is going on with you.
Best wishes.
Sylvia xxxx
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Hello Jacklin and Janetco,
I was just wondering what is happening with the two of you and how your treatment is going. If there is anything we can do to help please let us know.
Wishing you both well.
Sylvia xxxx
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Hello Chris,
I have just read your post with great interest and, as a fellow Brit, I would like to give you a warm welcome to our thread. We know we would rather not be in this place but we do survive it all and make great friends.
I do hope that chemotherapy is not going too badly for you. We all have different experiences with this long chemotherapy treatment and have ups and downs. Some have a very difficult time with sickness and nausea and some have problems with low white blood cells, but a lot of us have a smooth journey, and I was lucky to be one of them. I was told by a nurse friend to drink plenty of water throughout, especially straight after the chemotherapy dose, to get plenty of rest, to be strong. I found that to be good advice.
I can identify with what you said about all of this coming out of the blue. For me it was exactly the same. I suddenly had a large 6cms+ tumour, was in shock and really frightened, and thought my life would come to an end. Her I am, over eleven years since diagnosis, so hang on to that!
I was glad to know that you have been reading the thread and finding it supportive. It makes it all worthwhile. There is a lot of information on the thread and as you can see the thread goes back many pages. There have been groups of women ongoing since I started the thread in September 2010. Sometimes after groups have finished treatment and leave the thread, there are periods when it is quieter than others. I was wondering whether you started reading the thread from page 1. The first post was from Scotland if I remember correctly. Peter (Peterandliz) who posted about his wife, actually posted to say he had read the thread from the beginning before posting. I thought that was marvellous!
In order to post your details below your post, you need to go into your Profile page, post your details there and they appear automatically on your post.
I was glad to read that you have not had any real problems after two sessions of epirubicin and cyclophosphamide (EC) except for the GCSF, which I understand to be low white cell problems induced by the chemotherapy which knocks the immune system for six. Are you not being given Neupogen or Neulasta injections the day after your chemotherapy? My understanding is that this is an injection to help counteract the low white cell problem. My understanding also is that these drugs have side effects. I do hope the muscle pain will disappear.
I was interested to know that you are going to have Taxol and carboplatin for nine weeks after you have finished with the EC.
When I had my chemotherapy in 2005/6 it was more common to have docetaxel (Taxotere) than paclitaxel (Taxol), whereas in North America it seemed to be the other way around and Taxol was more common. Both drugs belong to the group known as taxanes. They come from different trees of the same species, one more common in North America and the other more common in Europe (yew trees). It would be interesting to know why one is chosen rather than the other. I am wondering whether it is to do with age. The same thoughts come to me about carboplatin. Some women are given it with T and others are not. From the threads we have Lilyp6 (Pam) who has carboplatin on her details for chemotherapy.
It is true that our breast cancer treatment is a long journey but we have to keep looking forward and it does come to an end. It will come to an end for you. Even when going through treatment, keep optimistic and try to live your life as normally as possible, but do not overdo things and get as much rest as you need.
Sending you fond thoughts.
Sylvia xxxx
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Hello everyone
I thought I would post a link to information about GCSF that Chris mentioned in her post. The link is:
https://en.wikipedia.org/wiki/Granulocyte_colony-s...
Granulocyte-colony stimulating factor (G-CSF or GCSF), also known as colony-stimulating factor 3 (CSF 3), is a glycoprotein that stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream.
Best wishes
Sylvia
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thank u Slyvia
U are right these thoughts serve no purpose at all. I've come home from hospital armed with lots of cookbooks after my dietician review and and everything is now going to be fresh and healthy. I found that try some new recipes got my mind off of things tonight and helped heaps. Just hoping they won't change my chemo for Friday. I feel well and am eating now do hopefully not. At least after Friday I will have two ac out of the way and only two to go. I have heard that taxol is not as difficult at least I hope so! I keep repeating the mantra that the oncologist gave me to try and stay positive becauas u said negativity serves no purpose. Thanks again Slyvia U er e
Cheers kat
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Hi, Valstim,
We went to St. Maarten years ago on a cruise, which side of the island do you go? I remember one side of the island was French, with nude beaches, and the other was Dutch, all very polished and diffferent food on both sides. It was beautiful, I hope you have a wonderful time. It is so nice to get away from things and have a breather.
Mary
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We stay on the Dutch side in Simpson's Bay. We have a timeshare there. It's quiet and lovely. Also you can walk to a lively but safe local area. That has lots of shops and eats. The timeshare has a relationship with a b & b. So we get the option to eat there for breakfast and dinner and she will pack a lunch for you to take to the beach. Yay.
So nice for me and DH to get away.
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Hello Kath,
Thank you for your post and I am glad that you are out of the hospital.
I hope the cookery books will take your mind off all this cancer treatment.
I was very interested to know that you had had a dietician revue and I would be most interested to know what he/she had to say. Here in England, the doctors and specialists only just seem to be admitting that there is a connection between healthy eating and good health. Remember, you do not have to do a lot of cooking to eat healthily and food in its most natural state is best for you. Try to eat a variety of berries, especially blueberries, raspberries and blackberries. Get plenty of green vegetables, but vegetables of all colours are important. Follow what we call the Mediterranean diet or the Rainbow Diet, as advised by Chris Woollams. Stay away from sugar and processed foods. Eat some oily fish, such as wild salmon. Make sure you are not deficient in vitamin D, as this is extremely important for breast cancer patients.
We discuss food, healthy eating, supplements a lot on this thread.
You are going to get through this. For the moment concentrate on Friday and try to relax.
Tell us about your life in Australia.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I think we all know how important vitamin D is. I saw this chart in a magazine entitled Healthy that I get from Holland and Barrett here in the UK. I thought this article would be of interest to all of you. It is the September edition.
http://www.healthy-magazine.co.uk/how-much-vitamin-d-do-i-need/
Best wishes
Sylvia
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