Calling all triple negative breast cancer patients in the UK
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Hi Sylvia
I didn't say that I don't like JC. I mentioned that the people he has surrounded himself with are intent on destroying the labour party. However, how much of your money would you be willing to wager that labour, led by JC, will win the next election? I personally wouldn't risk a penny. JC's supporters are not the people who have to be persuaded in order to win an election. Unless there is a resurgence of the liberal party, we now have permanent tory government.
Michael
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Hello Kath,
I was thinking that you might like to buy a small book about breast cancer. I had it to use all through my treatment and found it most useful and very easy to read. The title of the book is Understanding Breast Cancer by Professor Mike Dixon in the BMA Family Doctor sries. It is available on line through Waterstones and cost £4.95. You might find it in Smiths and Boots if you are indeed in the UK. A link to a source for this book is:
https://www.waterstones.com/book/understanding-breast-cancer/professor-mike-dixon/9781903474624
If you go to the Cancer Active web site and click on chemotherapy drugs you will find a list of 100 chemotherapy drugs. If you go down the list, which is in alphabetical order, and click on cyclophosphamide, doxorubicin, epirubicin, docetaxel, and paclitaxel, you will find a page of information for each of these drugs, including side effects etc.
I think you and others starting chemotherapy will find this interesting. Any other chemotherapy drugs you are looking for should be there.
Keep calm. Do not panic. You are going to get through this. We all have.
Thinking of you.
Sylvia xxxx
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Hello Michael,
Thank you for your interesting post. When I asked whether you liked JC I was just trying to get an opinion from someone outside of my immediate circle here. I know there are people who do not like his physical appearance and think that he does not have the look of a leader. What does a leader look like? I personally think that he would look better without the beard!!! I also think he should perhaps get nastier at PMQs, but that is not his nature. I am always surprised when I see him bellow out to crowds about one matter or another, but does not seem to have that voice power in Parliament.
I was interested to read that you think that the people surrounding him, Momentum, are out to destroy the Labour Party. I am wondering what the purpose of that would be. Do you think they want this separation of what is called the hard left from what is called the right wing or the centre. It seems to me that the right of the Labour Party could join the Tories and that the middle part could join the LibDems. What I call the true democratic socialists and the media call the hard left, or even the Trots, would be left as a minority party of protest. I really believe in the social democracy and good policies for the 1945 Labour Government and I think that has all gradually been undone, especially by the Blairites.
At a Labour Party meeting recently here, which I attended, there was the 30 minute NEC-stipulated meeting of the constituency for discussing how the constituency felt about the two candidates for the Labour leadership. It was strictly timed so anyone wishing to speak had just three minutes. This meant only ten members could speak. Afterwards there was a vote and the result was JC 66.66%, OS 28.21%, abstentions 5.13%.
I think that JC is going to win the leadership election against Owen Smith. I am not sure, given all the hostility from the media, and the PLP, whether he will win the next election. However, I do not think that Owen Smith will win the next election either. It could be that so many ordinary people will be hurting so much that, if the election is not held until 2020, they will throw out the Tories and vote in another party, such as UKIP. I agree that we could be in for a Tory dictatorship, so much for democracy.
Did you happen to read the article in one of the newspapers last week about how chemotherapy drugs are being wasted? Apparently vials are of a certain size and contain over the needed dose, so the excess is just thrown away. I am wondering, also, where they are throwing it away. Could it be getting into our water system like all the other drugs?
I shall talk to you soon. Please keep in touch.
Sylvia
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Hello Kath
The link for the list of chemotherapy drugs on the Cancer Active website is:
http://www.canceractive.com/cancer-active-page-lin...
Best wishes
Sylvia
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Hello Kath, again!
I have just remembered that the brand name for cyclophosphamide is Cytoxan. You can see how confusing all these letters and abbreviations can be. I hope they are now clear in your mind.
If you need any further information or help just let us know.
Fond thoughts,
Sylvia xxx.
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Hello Sylvia, and all here
Wow, there are a lot of new posters, it's wonderful. I guess I got used to our very small group, and it was easy to keep up. I am a bit behind now and hope I will not miss anyone.
You asked about my upcoming trip to Aruba. Aruba is an island off the coast of Venezuela. It is highly recommended by my acupuncture doctor, he takes his family there every year. It is a desert island, meaning they get very little rain, so it is not humid and steamy like most of the Caribbean islands, although I am not sure it's considered Caribbean. But it's not far from it anyway. He said a lot of elderly people go there, because their arthritis and other ills are better there. I have been to several islands, in the Caribbean and Atlantic, they have all been steamy and damp. I am very interested to go to this one to see how the weather feels to my aches and pains. The beaches are supposed to be pristine, and the diving excellent. I am not a diver, but may try snorkeling. Here we have had a very hot, humid summer and still August to get through. We had a unusually hot, and dry June and very unusually wet, humid July. And hot. August is starting out very rainy,
I have a message this morning with more news about our prospective Alaska trip, I would like to do this too. The trip being mentioned is in September of next year, which is rather cool there, we are trying to decide if we want to go on a trip requiring coats, gloves,(for me anyway) and long pants! Since we will be on a ship for 6 days we will need those clothes. The trip also includes a glass-enclosed train through Canadian West and Alaskan Mountains and a tour of the Denali Wilderness to see wildlife. Sort of a once-in-a-lifetime trip.
I am glad to see that Chris Woollams is back, maybe he needed a vacation too. I shall go over his posts soon.
Talk again soon, Mary
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Sylvia again, and all,
Had to cut previous message short, back again!
In answer to your question, I have not been very good about drinking the green tea lately. I do better in the winter with the hot drinks. I am going to try making a small quantity and icing it, maybe that will work better. I have also slacked off the bitter apricot, they were upsetting my stomach, which seems to be very sensitive these days. I am taking probiotics, and enzyme. I eat a large spoon of fermented kraut when I think about it, but I still have to be careful what I eat. Not sure what is going on, I seem to have so many things going on in my body lately I can't quite figure it out. I have had so many different tests already. I have family visiting for the next week, and we eat a lot of meals together, that is different for me too. I eat very plain food when by myself, a piece of fish, a salad, and vegetable of some kind.
I had to smile when reading about the political situation in UK, and the talk between you and Michael. It is very heated over here too over our upcoming election. I have to go today and vote in our state's primary election. For governor on down the line. There are some real odd characters in the running, I am almost tempted to vote for some of them, it almost doesn't seem to matter anymore who wins, it is a big system that has a mind of its' own and the office-holders are just figureheads that make a lot of money and have some power to influence.
Have to stop again, will check in later with everyone,
Mary
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thanks Sylvia I'm a 55 year old nurse from Australia and so very sad and scared! Try hard to be positive but when u see the amount of negative info aboutits sooooo hard! I feel so lost. My family can't understand why I'm like this but I just keep seeing that word triple beg! What sort of follow up is usually done after treatment? Also I'm taking vitamin d3.?what dosage is recommende
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Hello Michael,
I have just been reading link 23 about researchers find target for triple negative breast cancer from the Daily Californian.
I found it most interesting but must confess that I do not completely understand it. It says that researchers have discovered that triple negative breast cancer tumours rely on fat as an energy source. I was wondering how they managed to find this. It further says that the researchers learned that these tumours prefer to feed on fat, and so, in order to target triple negative breast cancer tumours directly, researchers must prevent the breakdown of fat in order to starve the tumour. It looks like they have based all this by discovering these tumours put more effort into breaking down fat molecules as opposed to building them up. I cannot quite understand the significance of this. Apparently, this has all to do with studying the metabolism of the cancer, which had previously not been studied. Researchers further found that when they prevented the breakdown of fat, it stopped both the human patient tumours and model tumours from growing further.
It looks as though researchers are planning to test previously approved FDA drugs that inhibit fat from breaking down in order to allow them to develop a new therapeutic target for breast cancer.
I am wondering what these approved FDA drugs are that inhibit from breaking down and for what diseases are they already using them? It worries me that pills are always being used to stop natural processes in the body.
It seems that the drug companies are almost desperate to get triple negative breast cancer patients on some kind of medication when I tend to think that the positive thing about triple negative breast cancer is that after standard treatment our bodies can be left alone to build up our immune system to keep the disease at bay. Of course, this is my own personal opinion and others may prefer to swallow pills post-treatment.
Yesterday I reread papers about the chemotherapy drugs that are currently being used for chemotherapy for breast cancer, and there was a detailed list of all the side effects of these, which are horrific. There has to be something better. It got me thinking that, although I feel fine, there is no knowing what damage these drugs have done to my body.
Keep up the good work of sending these links.
It is a sunny morning and I have been up very early catching up with paperwork about the running of our apartment complex. We had a lot of rain on Monday and today we are supposed to have stormy winds. Exmouth is just full of people on holiday.
There is a leadership session on Thursday August 4th live, on line, from 7pm. The link is labour.org.uk/debates.
I find it odd that we can only view on line. How will the general public know about this? Only members will be notified.
I am concerned that the House of Lords is trying to force a second referendum. That lot of unelected parasites should be zapped!
As for Cameron, all these titled appointments should be declared illegal. Why should a resigning Prime Minister be allowed to appoint 42 unelected cronies to the House of Lords. It is already bursting at the seams and has more people than in the Commons. When of when are we going to get into the 21st century?!
Wishing you all the best.
Sylvia
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Hello Mary,
It was nice to hear from you and many thanks for two posts.
I must admit that Aruba sounds really nice. It sounds like a healthy place to be. So many people here in the UK are crippled by arthritis, so it sounds like a good place for them to go.
Your possible trip to Alaska sounds really good.
I have just printed off all the details from Chris Woolams's latest email and shall try to read them later today. They all sound interesting.
Have you read link 23 from Michael? I would love to know what you make of it.
I can understand that you do not fancy hot green tea with all your hot humid weather, but as you say you could have it iced. I am so busy that often my mugs of tea are cold when I get to them, but I quite like them cold.
I was surprised to read that the bitter apricot kernels are upsetting your stomach, as I have never had any problem with them in the more than eleven years I have been taking them. Like you, I eat sauerkraut on a regular basis, as well as soy yoghurt with live culture. I also buy small jars of Japanese miso and make a mug of soup with it. I eat plain food as well, oily fish, vegetables, especially green ones, lots of berries and raw foods.
I do hope you will gradually feel better but who knows what our cancer treatment has done to our bodies? It does not seem right that we have had to poison our bodies with toxic drugs in order to stay alive.
These are interesting times in the US and the UK. I do not think we have all the razzmatazz of the conventions in the US. I have watched some of the Republican and Democratic conventions and cannot believe the noise and hysteria. I thought Hillary Clinton was over the top and I do not believe she is sincere. I do not know what to make of Donald Trump, but find he is down to earth and entertaining.
As for the UK, it needs to be dragged into the 21st century. We are so archaic. We had a referendum, the results of which will not be accepted by the Remain side. There now seem to be plots afoot to force another referendum. The Prime Minister resigned because Brexit won and we now have an unelected Prime Minister who will not call an election and who will not implement Article 50 to get Brexit going. In all of this, apparently, the 1972 Act of Parliament could be repealed at once and that would take us out of the EU immediately, so why is this not being done? It is about time we had proper democracy or stopped calling ourselves the Mother of Democracy! As for Labour, I am not sure where it is going. What can you do with a country that has 7,000 miles of coastline and just three boats keeping watch over it? It is mind boggling.
I do hope you enjoy your family visits.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I am so sorry that you are having such a bad time. I know that a diagnosis of breast cancer does frighten us but things do get better. You will find that you will be busy during chemotherapy, but once you get started on the treatment you will be fine.
On Monday August 1st I picked out the following article in one of our newspapers, the Daily Express. The title was Cancer sufferers are now twice as likely to survive, by Leda Reynolds. Macmillan Cancer Support revealed that more than 170,000 people are alive today despite being diagnosed with cancer more than 25 years ago. Apparently experts said the survival rates had shot up partly due to earlier diagnosis through screening programmes, advances in diagnostic tools and better treatment.
Jane Maher, chief medical officer at Macmillan Cancer Support, said having the illness is no longer the death sentence it was. She further said "While it is not always life ending, it is life changing and we need to ensure that people who have had the disease or are living with it have a good quality of life and tailored, appropriate support".
I was thinking that perhaps you should join a support group to help you along, if you have anything locally where you live. We can help you all we can here in the group, but it sometimes helps to talk at groups organised by charities or even some counselling. Anything that helps you to express your fears and anxieties will help.
I know you are starting chemotherapy tomorrow. It will be quite a long day so I hope you have someone going with you to give you support. Do you have friends and family who can support you through this long chemotherapy journey? Remember to drink plenty of water after treatment and to take any anti-nausea medicine that you are given at the hospital. Try to go in a relaxed way.
I see that you are a nurse. Do you work in a hospital setting? We know that none of us wants to be here but it is good to have someone from Australia. Which part of Australia do you live in? Do you have good health care services? Do you have a speciality as a nurse?
Do not read anything negative about breast cancer and treatment. Concentrate on the positive and tell yourself you are going to get through this.
Dealing with family and friends is difficult, as they can have no idea of what a cancer diagnosis does to a person. Try to explain to them but your best companions will be those going through treatment with you or those who have completed their cancer journey. We are all here for you.
When you have finished chemotherapy and radiotherapy, you might have some scans to make sure all is fine. These scans seem to vary. You will then start a process of check ups every three months which will eventually go to every six months and then once a year. At least that was the procedure for me in the UK. It will take time to adjust to all this after being busy going through treatment. For everything, just give yourself time.
As for the vitamin D3, I am taking 5,000 IU daily and have been doing this for some years. You might want to get a blood test to see what your vitamin D level is. It seems that a lot of cancer patients have low levels of vitamin D. make sure you eat healthily, especially green vegetables such as kale, broccoli and cabbage and get plenty of berries, especially blue berries. You might like to sign up for Chris Woollams email (Cancer Active).
Wishing you all the best. Keep your chin up for tomorrow.
Sylvia xxxx
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thanks Sylvia ,
Just talking to u calms me so much and u are so logical in everything u say. I just need to have faith in the good prognosis the Drs gave me and thank my lucky stars that it was found early. I'm ready for chemo and I think I'll be better once it's startedI have been eating so much better since my diagnosis and it's making me feel better as well. U are right I need to stop focusing on the bad and concentrate on the positive and it will help do much! I need to remember that it's only been 4 weeks since diagnosis. My vitamin d levels have been low so I have been taking 2000 IU. . I have also booked to see a psychologist which I think will help as well. Will be in touch soon
Thank u so much
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Hi maryna8,
Aruba is a beautiful island indeed. Just to let you know that it is incredibly windy and it is common to be on the beach and have to shield your eyes from the flying wind. A hat is an absolute must, but be sure to tie it to your head somehow. The ocean can be difficult to swim in as the bottom drops off very quickly - about 2 yards out the water is over 10 feet deep! Not swimmable in my mind and I'm an avid swimmer.
Having said all that, I love Aruba. It is arid and the cacti are beautiful. Enjoy your time there - we'll be there in early December!!
Jacklin
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Hello Hanieh,
We are missing you on the thread and are hoping that all is well. If you are busy just pop in and say hello.
We hope no news is good news.
The same goes for Amanda, adagio and PeterandLiz. We do need our long term posters.
Sending all of you very best wishes.
Sylvia
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Hi, Jacklin
We may have to arrange a signal, such as wearing a red rose or a yellow hat or something. I will be in Aruba too in early December, from the 5th to the 12th. Would be very fun to say hi to each other! I have a big crushable hat that fastens under the chin, so am ready to go in that respect. I heard that before about Aruba, that there is always a stiff breeze coming off the ocean. Supposedly the resort where we are staying has a beautiful beach that is shallow for a distance out. I was in Mexico in January and our beach had a precipitous drop, I never went in past a few feet.
I wanted to tell you that I ordered the book you recommended "Picking Up the Pieces, Moving Forward after Surviving Cancer". I received it yesterday. Haven't had time to open it, I have a lot of family visiting.
I hope you are feeling well, I am okay but trying to keep up with all the visitors is very tiring, I am way out of my routine!
Talk to you soon, Mary
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Ladies
I'll be in aruba in January. Wee hooooooo
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Hi, Valstim,
Isn't it nice to have something to look forward to? I am very much anxious to see it, and enjoy the relaxing. I think it is almost impossible to relax at home, always something coming up.
Talk soon, Mary
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Hi Sylvia, Mary and all
I'm again behind the posts. I sometimes have a quick look on the posts but I'm really sorry to be in short of time to post here. You know how time consuming it can be for me as English is not my mother tongue. I'm always afraid of making mistakes in expressing myself.
Mary, how I felt sorry when I read your post about your husband. It's really heartbreaking to miss your lifelong partner and the person you must really have loved deeply. I'm also concerned about your health. I hope everything gets better soon. You know I can't sometimes understand some medical terms you express here and I have to search the equivalents in Persian.
I saw some new members here. I want to welcome all of them. Though I feel deeply sorry for their being here, I would like to tell them that this thread and all the people here, especially Sylvia and Mary , are so supportive and caring that you will never feel left out. We all here can understand the deepest emotions that nobody out there can understand. I'm two years away from my diagnosis and surgery and I just want to tell all newly diagnosed that life will get back to normal. We should just try to find ways of handling our emotions. Now a days I'm so busy that cancer is sometimes forgotten in my thoughts.
Sylvia, the pills prednisolone, which I took for my thyroid nodule and which I stopped using because of their extreme side effects are still bothering me. I have heartburns and stomach pains as a result of taking those nasty pills. I hope I get well soon. I wish doctors would care more about giving enough information to their patients. I had to take them with some antacids.
Lots of love
Hanieh
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Hello Mary, Jacklin and Valstim52,
I was interested to read that all three of you have been talking about Aruba. It would be wonderful if you all meet up there and got to see one another in the flesh. I very much look forward to "Tales from Aruba".
I was wondering how adagio must be feeling as the days approach for her long stay in Australia. I do hope she will be able to send us some posts and photographs.
I am wondering what has happened to my fellow Brit, Amanda10. I know she was finding it hard back at work, but it could be that she has gone travelling, as I know she loves this.
I do hope you are all managing to keep up with the thread as it has been rather busy.
I still have information to post about that recent email from Chris Woollams of Cancer Active. There is so much in it. It is worth signing up for his email, having a good read of it and then clicking on the relevant parts for more details. It is definitely worth having a read about the benefits of pomegranates and the benefits of asking for chemotherapy sensitivity testing to see whether recommended drugs will be of particular drugs will be of benefit to you.
Have a good weekend.
Sylvia xxxx
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Hello Hanieh,
It was so nice to have you back on the thread again. I noticed you have changed your username to Honeytagh. Is there any particular reason?
I do hope you will gradually catch up with the posts so that you know what new members are going through and how they are feeling.
I do understand that you can be short of time. I know that you are busy working hard with your English teaching as well as looking after a home and family.
I would not worry about your English. It is excellent and it does not matter if you make a few mistakes.
Like you, my heart goes out to Mary, who is having to adjust to life without her much loved husband. I feel she is strong willed and is managing to cope, but I know from friends and neighbours here how difficult life becomes without their soul mate. I feel that I can cope with almost anything as long as I have Raymond with me, but the thought of losing him fills me with anxiety.
I can understand that you may feel that you do not quite understand some medical terms, but they can always be simplified so that you get the gist of things.
Thank you for your kind words to those women that have recently joined us and are going through all the fears and uncertainties that we have all known so well. I am sure your kind words and encouragement will help them along their journey. Thank you for your kind words about Mary and me, but do not underestimate the strong supporter and poster that you have been on this thread and will continue to be.
If you are so busy that it takes your mind off cancer, then that is all for the good. I have always said on the thread that as time goes on you will put cancer away in a dark little corner and go forward with your life. The other day I heard a saying that I very much appreciated. It was "do not count the days, make the days count".
I was sorry to read that the pills prednisolone which you took for your thyroid nodule are still bothering you. I remember that you said you had stopped taking them, but I thought that afterwards you said that you had gone back on them. When is your consultant coming back from the three months that he was going to be working in the US? You really need to see him. Is it possible for you to go and see your GP? My medical book says that oral predisolone taken short term rarely causes serious side effects, but that long term use with high doses can cause systemic effects such as osteoporosis, fluid retention, indigestion, diabetes, hypertension, and acne. It also says that enteric-coated tablets reduce the local effects of the drug on the stomach but not the systemic effects. My book mentions that a low-sodium diet may be recommended when the oral form of the drug is prescribed for extended periods.
You are not supposed to stop the steroid drugs abruptly, but wean yourself off. I think, if that were me, I would be getting a second opinion and asking how the nodule on the thyroid could be treated differently. I hope this helps.
Try to keep in touch, even if you write a few lines. Our small group has been going for a long time and you, Mary, adagio, Amanda and Michael feel like close friends to me.
The other evening there was a short feature on the news about life in Iran with particular reference on Tehran. What a busy city!
That is about all for now.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I was wondering how your chemotherapy went yesterday. I do hope it went well. Give yourself time to recover from this first dose. As the first week passes you should begin to feel better.
Hello 4everStrong,
I hope all is going well if you have restarted your radiotherapy.
Hello lillyp6 (Pam),
I hope your chemotherapy with carboplatin is going well.
Hello Joy77,
I think you are still going through chemotherapy. Are you getting on alright?
Hello Valstim52,
How is the radiotherapy going? Please let us know if you are having any side effects that you are finding difficult to cope with.
Hello to moreshoes in Holland, PeterandLiz, JanetCo and Clauclau,
Janet, have you started treatment now?
I hope I have not forgotten anyone. If I have please give us a shout and let us know how you are.
Best wishes.
Sylvia
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hi Slvia
1st dose of AC down and not sure how I feel. No real side effects just a bit heady from the Dex but apparently day 4 will be my worst! Still very scared as I live in a small city in western nsw and everyone I talk to has a hormone receptive cancer feel very isolated . A bit happier now I know treatment started tho and have decided to focus on the fact that my oncologist gave me a 90% chance of non reoccurance my cancer was a 10mm stage 2 grade 2 with negative sentinel buopsy I need to put my faith I what they say and think about what's happening today not worrying about the future. I need to do this so I can see my grandkids grow up! I've made an app for a pych consult next week because of my anxiety and start yoga classes next week. It's so difficult living in rural and remote areas and afte chemo when rads start I have to go to Adelaide which is 5 hours away. Oh well I'll cross that bridge when I come to it! Will keep u posted
Cheers
Kath
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Dear Sylvia,
OMG!! What a journey!! I got lost in this website and I didn't know how to check back where I have been posting...
This is what I did: one day ( probably when I was very scared at the beginning of the diagnoses) as I was browsing the website, I came across with all these themes and I remember that Tripe Negative was one of them, before and after surgery was another one, to name a few - of course I can't remember all the groups I had joined to. I went to several groups to place comments, ask questions, disclose my fears, exchange advises, etc; however, when it was time to retrieve information I got lost. That's when I let you ( and the entire group of supporters) down. I am deeply sorry for that. I just want you to know that I have been active at another group, but always looking and searching into more groups for this thread. Today I finally came across with another group about TN and someone mentioned your name there. That's when I thought that I was familiar with the name "Sylvia" but I didn't know where Sylvia was to be reconnected. Good news is that someone in the other group mentioned your name as being very knowledgeable about TN, and she told us not to be shy to get in just because you are at the UK community. Those were the words I needed to be able to check in this group looking for you. I am happy I found you!
Of course I went back to where I left, and I read all I had missed. I will refrain from comment on all what has happened since I left a month ago. A lot has happened to me since then; threfore I will briefly start all over to give you all an update of where I am now:
I am finally recovered from a BMX and the tumor was removed overall with 5 cm with clear margins; 15 lymphs were removed and 1 came back positive with 0.0002 ( which is a microscopic type of finding). According to my RO, if we were 10 years before, I would hear that ALL 15 lymphs were negative. This is how advanced technology is nowadays. He also told me that I am considered a borderline case for radiation, BUT he would recommend radiation anyways because I am TN. I got out of the surgery with double reconstruction involving TEs. I was filling them weekly until I started chemo on 7/18. Now I am 400cc but going slowly because I have to wait on the final decision about having radiation or not. I am still debating! So far I had only one round of chemo, and guess what? I am now officially bald. Thank God I walked into the salon to get a haircut today with a wig inside a bag. The hairdresser washed my hair and the drain got clogged. The rest of the hair is now part of the past tense in the history... LOL
I am scheduled to have my second chemo on Monday 8/8, but I am not quite sure if I will be able to do it because my white blood cells came back low in my blood count test today. It says I have 2.8 when the normal required is 3.8-11.0... I asked what I could do to improve my WBC numbers and I was told "nothing to be done. Hopefully more cells will regenerate faster than the ones that die." Of course I googled it and tonight's dinner was salmon with roasted garlic ( 2 full cloves) - I just found out that garlic is a natural way to boost your WBC. Let me know if the group has any other thoughts on how I can improve my white cells.
I am glad I found you again. This time I am part of this group and 2 other communities: June 2016 surgeries and July 2016 chemo. I believe I can manage it !
I hope to hear from you all anytime soon!
Gentle hugs from sunny California,
Claudia
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Hello Kath,
I was glad to know that you have got through your first dose of AC. Try to tell yourself that you are going to be alright, whatever the day, otherwise, if you think you are not going to feel good, then it is possible you can bring it on. Day 4 is presumably the day after you finish the medication that you have to take for three days after chemotherapy to stop nausea and vomiting. Have some ginger and lemon tea or real grated ginger in hot water and some squeezed lemon. You can also get ginger capsules.
Try not to worry about being the only one close by you that has non-hormonal breast cancer. It was the same for me. I suppose this is quite normal since just one in five women is affected by TNBC. Tell yourself you will not have to put yourself through years of tamoxifen and aromatase inhibitors. All of them have nasty side effects. Be positive about being negative! Be positive that you are not HER2+ and will not have to go on Herceptin.
As I have just said to Hanieh, do not count the days, make the days count! Nobody knows what the future will bring.
Tell us a bit about your life in Australia, as all of us on the thread like to inform ourselves. Tell us a bit about your children and grandchildren.
I do hope all will go well with your appointment for a bit of counselling. It will be good for you to be able to talk about all that is going on in your mind. Is there any informal counselling or therapy and relaxation sessions at your local hospital for cancer patients?
For the moment do not think radiotherapy and the fact that you will have to go on a five hour journey to Adelaide. That is not very good but the powers that be in the medical establishment seem to do this a lot. It happens here and women have to stay overnight somewhere. When I was going through treatment there were women travelling from vrious parts of Devon to the big hospital in Exeter and being put up in the nurses quarters. Cancer patients get so tired that they need as little travelling as possible. Unless people have been through cancer they have no idea how tired patients can get.
I do hope yoga will help you. Mary does yoga so you will be able to chat about that.
When do you have your next chemotherapy dose?
Thinking of you and sending best wishes your way.
Sylvia xxxx
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Hello Claudia,
I am so glad you found your way back. It was nice of someone to point you in the right direction and it is good for you to be with the TNBC threads. If you go to the top of the page you will find a link that says Add to my favourite topics and click on this, this thread will be listed under Favourite topics on the left, and when there is a post it will come up as a round coloured disk.
I hope you will find us more easily in future and we are all only too glad to be here to help you through your journey. Most women find chemotherapy the most difficult part of the cancer journey because it is so long. I can see from your details that you have got through the surgery part and you will get through the chemotherapy. I was amazed at how detailed they could pinpoint that one node which came back positive.
Have you had any problem with lymphoedema post surgery when lymph nodes are removed? This sometimes happens and you get swelling in the arms and puffy hands. This can be treated at lymphoedema clinics within the hospital.
I hope everything will go well with your chemotherapy treatment. Focus on this for the moment and then see what goes on about radiotherapy when the time comes. I know that lots of women do have radiotherapy with TNBC in order to mop up any stray cells. I am not surprised that you are bald after one dose of chemotherapy. It happened in the same way to me. I also opted for a nice wig and a lot of people thought I had not lost my hair. I did not fancy the idea of scarves or turbans. Some women do try ice caps to save their hair, but my oncologist was dead against this and said she thought it invited infection. I understand that cold caps are quite an ordeal, but every woman has to make her own decisions about her treatment. Your scalp can get very dry during chemotherapy and I was advised to wash it gently with Johnsons Baby Shampoo. I used to rub avocado oil into my scalp before washing with the baby shampoo. Just focus on the fact that your hair will slowly grow back.
We shall all be thinking of you on Monday August 8th when you have your second chemotherapy. It looks as though you are having treatment every three weeks, which is what I had. I do hope this will go as planned and that your white blood cells may somehow manage to go up. I was wondering whether you were given any medication to get your white blood cells up. You must be suffering from what is known as neutropenia, low white blood cell count. I think this happens quite a bit, but I was lucky not to suffer from it. I thought they now gave medication for it. I kept my red blood cell count up by taking an iron supplement and eating iron rich foods, such as prunes and dried figs. I am posting a link which I found on the internet and which might be of help.
That is all for today.
Fond thoughts
Sylvia xxxx
ps your dinner sounded good. I eat a lot of poached wild salmon and I think the garlic cloves are a good idea. Garlic is supposed to be a natural antibiotic.
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Hello Claudia,
I thought you might be able to ask your oncologist to let you have a lower dose of your chemotherapy on Monday if your white blood cell count is still low. Did you not get a Newlasta injection the day after chemotherapy. This increases white blood cell count. When the count is low there is a weakened immune system and a greater risk of infection. Stay away from crowds and people with colds.
Best wishes,
Sylvia.xx
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thanks Sylvia it's just soo much to take in in so shorter time. I'll get some ginger tea and see if that helps. Felt a little more empowered after first ac do here hoping this keeps going. Will go to work tomorrow and see if that will take my mind of off things. I work in public health so it's not a hands on position as such thank goodness in my frame of mind but more managerial. I have also just commenced my nurse practitioner program in tn services which will help me take my mind off of things. Not thinking too much about rads as yet as that will mean a 5 week stint in Adelaide but slowing going forward. Any tips to manage a multi modular thyroid whilst on chemo? I'm in thyroxine but was wound wrong what else I could use herbally thanks so much for being here u make me feel so much better after talking to you
Cheers
Kat
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Dear Sylvia,
Thank you for getting back to me so fast and for giving me instructions on how NOT to get lost again! LOL
I will try to answer your questions and I appreciate your comments and link on things that I should be focusing now.
I have had no problem with lymphoedema . My arm and hand are normal sizes, and I have no pain or swelling. I am exercising my arm/hand by opening and closing my hand 25-30 times for 4x per day. It helps the lymphatic system to do its job.
I am a little bit like you when it comes to scarves and hats, so I got a natural hair wig ( see picture below of my mom and I before leaving the hair dresser yesterday) . BTW: I am 46 y.o.
I did check on several ice cold caps before deciding over the wig. The main turn down point to me was the systematic way to administer the caps. From temperature conservation, application before, during and after chemo, number of exchanges every 20-30 minutes... It was too much to deal with. Besides, I would need to have an entourage to help with dragging the cooler and helping me to set up on time. My MO wasn't thrilled about it either. There was some unconfirmed researches about possible damage of the brain... I didn't think it was worth the trouble
Thank you for thinking of me on Monday. I will ask my doctor if I could benefit from Neulasta or Neupogen shots after chemo. And Yes, I was told I have neutropenia. Thank you for your link.
I spoke with a nutritionist ( friend's friend ) and she recommend me to follow things on this site:
http://renegadehealth.com/blog/2013/12/30/5-ways-t...
I am home until Monday to keep myself away from possible people with cold. Thank you again,
Claudia
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Hi, Hanieh
It's so good to see you here, I think of you often. I'm glad you are so busy with your work, it's good to get your mind on other things besides cancer.
Thank you for your kindness about the loss of my husband, he had been ill for a while, but he got much worse about the time I found my tumor. We were ill together while I was doing chemo and recovering from surgery, and I was starting to come out of all of it a little when he died. It was just so much happening at once that I believe I got a bit overloaded with it all. It has all made me very aware of how short life is, how quickly it can change, and how important family ties and friendships are. I treasure my old (!) friends here, and am happy to meet new ones. There are a lot of my family members around here this week, and into next, and it is wonderful to see them all together.
Are you still taking the prednilosone? I think it is not good to take steroids for extended periods of time, and as Sylvia said, you have to taper off them. My husband once had to temporarily take large doses of steroids, and they said if we didn't taper off them properly it can affect the adrenal gland.
better go for now, another busy day
Talk soon, Hanieh
Love, Mary
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Hi, Claudia,
Sorry you are going through all this now, but glad you are here. That is a lovely picture of you and your mom.
I thought the hair loss was not too big a deal, I had seen a lot of people go through it and their hair came back. Mine came back rather different than it was before, but it's okay. I was not prepared for the loss of eyebrows and lashes, that gives one a rather "alien" look! I suppose when I had seen models with bald heads in magazines they looked so beautiful, but they still had the eyebrows etc. There will probably be people in your clinic that know how to apply makeup however. They were in the clinic I was in, although I didn't go to their classes.
I also had neutropenia after my first chemo dose. My white cell count was down to .03%. I spiked a fever and was hospitalized for a few days. After that my chemo dose was split up, and I made it through the rest of them fairly well. I did have the Neupogen/Neulasta the day after every chemo.
The ice caps do sound like a lot of work, and from what I have read, not always successful anyway. Your pretty hair will come back.
I am glad you don't have lympedema. My doctor thought I had it because I had a lot of arm/shoulder pain, but it turned out to be a partially torn rotator cuff.
I noted you said you don't know anyone else with TNBC, I only know one other person. She is doing okay, her cancer had already spread to her lungs at the time of diagnosis, but that was years ago. I come here to talk to others with TNBC, but I do know a lot of women with ER+ cancer.
It looks like you have a great companion in your mother, that is wonderful.
Take care, and talk to you again soon,
Mary
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