Calling all triple negative breast cancer patients in the UK
Comments
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Hello Lou,
Thank you for your post. It is great that you have just one more Taxol to go.
Be sure to ask your oncologist what she advises about numbness in the fingertips and soles of the feet. We need to keep informed as this neuropathy is not much fun. I ask about it whenever I can and am always told nothing can be done about it.
It is a nuisance about eyebrows and lashes. Mine are both quite fine and delicate since treatment and I just leave them as they are.
I am sure, if you look into it, you can get permanently drawn eyebrows. They do all sorts of things here at the hairdressers and beauty parlours.
It does take quite a time for the hair on the head to grow back. I wore a wig after the first chemotherapy infusion in November 2005 and I was still wearing it in December 2006. I finally stopped wearing it about March 2007. by that time it was darker than my natural brown and getting a bit Afro-like. It soon grew very quickly then. I keep it quite short now and it looks very healthy. When I was bald I used to rub organic avocado oil into it to nourish it. I used the ordinary avocado cooking oil. I would think organic coconut oil would be good as well.
I do hope you have a lovely time in the Philippines and that you will send us photographs.
Keep happy and keep well.
Fond thoughts,
Sylvia xxxx
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Hello Mary,
Thank you for that beautiful photograph. Just looking at it lifted my spirits which have been somewhat low lately.
That is interesting about the lung detection etc. but I do wonder about doing things like this and filling our minds full of anxiety and worry.
I have just started reading a book entitled Homo Deus - a brief history of tomorrow by Yuval Noah Harari. I have just read twenty pages and find it captivating. I think you might like it. I read his first book Homo Sapiens which I found most interesting. They are non-fiction. The latest book is in The Sunday Times Best Sellers list. The Guardian describes it as a spell-binding book.
Here in the UK we are in for six weeks of non-stop fighting until the General Election. I do wonder what will be the result and i think it could go any way. I have always voted Labour here in the UK and was a member for a few years, but ended it when Labour went for Remain in the referendum, because they do not believe in immigration control. we are way over-populated for our size. I think there will be tactical voting in the election with those who voted Brexit voting for Theresa May. I still have my doubts as to whether we shall get Brexit that the people voted for.
In France the two main traditional parties did not get through to the next round, so we now have Macron and Marin Le Pen fighting it out to be President.
I have just been told by a friend of mine that her step-daughter-in-law, German by birth, and recently diagnosed with metastatic breast cancer, went off to Germany last week to seek treatment. She is already having chemotherapy treatment tomorrow. She had hormonal breast cancer with just surgery and no chemotherapy or radiotherapy and it has come back and spread after seven years. I think she will probably get better treatment in Germany.
That is all for now. Keep in touch, the thread is relatively quiet, but I see that new threads on TNBC are forever being created by patients newly-diagnosed.
Sending all my love.
Sylvia xxxx
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Hi Mary and Sylvia,
Mary the flowers are beautiful and it is nice to see them in bloom.We only have forsythia,daffodils and tulips.The oral chemo for triple negative is Xeloda.It used to be given for only stage 4 but now they are using to prevent recurrence.I met NYC radiation oncologist and I really like him.I had the cat scan and tatooing and will start MAY 8 with a dry run May 5-36 sessions!he actually noticed a feeble bumps below my Scar that he will watch.I hope they aren't anything.
Love
Rhond
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HI, Lou,
So glad you only have one more session to go, that's great! Yes, you must do a happy dance. I think on my last day of chemo I stopped at the local ice cream store and had a big cone.....I usually never eat ice cream so I felt very sinful!
I hated it when my lashes and brows fell out, I was prepared for the hair drop, but not for the lashes and brows. I think mine started coming back when on the Taxotere, but my brows didn't come back in very well, I use cosmetic on them if I want them to look nice. But I am older than you I think, yours may come back fine. i read somewhere that getting older also makes brows thin. Other than the drawing in, I don't really know what else you can do right now.
Don't worry about your relatives, you can't control how they feel so just enjoy your time with them, and with your sister. They will just be happy to see you!
Talk to you soon, Lou
Countdown to being finished begins!
Mary
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Hey Rhonda
36 sessions sounds overwhelming but it's every day right? I have heard it goes by fast. I didn't have radiation so can't expound much about it. Are you taking the Xeloda for 6 months or longer? I have heard it's not bad, I know a couple of people who have taken it. I'm glad he found the little bumps and is going to keep an eye on them. They may just disappear!
I have another peony bush which is going to explode into flower any day, and it's a bigger bush than the little guy that produced the first bloom. I think peonies love the sun, and the little guy is a little too close to the viburnum; but nobody ever accused me of knowing exactly where to plant something! I have planted things in the wrong place many times over the years, and I like the plants that put up with it and grow anyway.
Talk to you soon, I will be going on a trip next week but I will try to check this site to see how things are going. Don't know about the web connection, we will be on a ship in the Mediterranean. I think there is a daily fee for use, and it's not a small fee; I'll have to look that up again.
Talk soon, Mary
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Hi Mary,
Have a wonderful time on your cruise-it sounds like it will be amazing.I went to Italy with my daughter 6 years ago-wonderful memories!!I am a little overwhelmed with 36 sessions but one day at a time.I think Xeloda will be 6 weeks.Cruise Internet on Celebrity's was around 15 dollars a day-expensive! Hope to see pictures of your cruise!
Love
Rhobda
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Hi Sylvia/ Everyone
Hope everyone is doing ok both those still going through treatment and those that have finish and trying as best as we can to live life to the max.
I have just been trying to catch up on the posts as I've had a few busy weeks. I had my big 50 birthday and yesterday my daughter was 28 so had a really lovely time.
Mary your flower photo is beautiful, l love flowers and think peonies are gorgeous.i have just been out for a run and passed a small bluebell wood, It was so beautiful a real sight to see.
I have read a few posts about eyebrow loss during chemo. I have always had quite thick eyebrows and was more bothered about losing them then my hair at the time ,as I think they shape your face. Just before treatment I had them tattooed. The tattooist did a really good job she did them to resemble fine little hairs. They looked really natural and I would definitely recommend it, it was painful and a little expensive but for me well worth it .
Lou so pleased you have one more treatment to go. I will be in Singapore from 8th May for 10nights. If you feel well enough and it's not too far from you we could meet up for coffee. I will be in Clarke Quay. I will private message you my mobile number ... if I can remember how to do it lol.
Every month I go to a support group called Pink Sisters, I have made some lovely friends there. One lady is just 21 years old she had her treatment in 2015 like me. She has just got into the final of a local beauty contest Miss Staffordshire. One of the dresses she has to make by hand and is tying little pink bows on with all the Pink Sisters initials. She is really living life to the full and is doing things that she probably would never had the confidence to do before.
Lots of love to you all
Amanda
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Hi to all,
Just wanted to report I had a strange PM, a very long PM. It was supposedly from a breast cancer patient in another country. Her husband had died and she was worth about $10,000,000. She wanted me to have it to donate to charities of my choice. She was dying so whatever I thought was fine. All I had to do was send her an email and she would tell me what to do.
It's the first time I've had anything like this on this site, I reported it as SPAM and it was immediately deleted. Apparently someone had a thought to come here and try to take advantage of people, some of whom are ill! I can't stand the creeps who do this kind of thing.
Talk soon, Mary
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Hey, Rhonda
Well, the internet package on the ship is now $27 per day, seems pretty steep! But I have noticed that everything that's not included in purchase price is quite expensive! Oh well. I will decide when I get there. They say I can also pay just one day here and there.
Will you have to drive to the city every day for rads? The people I knew disliked that part the most, just having to go every day. They said that once there it was a 10-minute process. But then you will be finished and you can do the happy dance! It sounds like you are in good hands.
Talk to you soon, Mary
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Hi, Sylvia,
As to the early testing for lung cancer, I agree it would probably stir up a lot of worry because we can have knots, nodules and cysts that aren't anything bad. The doc on the radio also said they are getting closer to finding blood tests that would screen for lung cancer.
The book you are reading does sound interesting, A History of Tomorrow. I ordered a couple of books to take along on my trip, one is called "Andy Warhol was a Hoarder; Inside the Minds of History's Great Personalities". It is non-fiction, it is about geniuses who are actually very eccentric. For example, if Albert Einstein was alive today, he would probably be known as having high-functioning autism. And perhaps would have been medicated away from his genius! It sounded interesting. I do find it somewhat disturbing how children are so scrutinized these days; sometimes for the good, but it seems like idiosyncracies are not tolerated very well, they get labelled and "managed". And perhaps it's for the best, I don't really know. I do know that in my high school graduating class (1969), the girl who was valedictorian has since committed suicide, and the top boy did not fare much better after school; the last time I heard he was homeless and in and out of institutions.
The cruise ship will also have a library aboard, one can take any book to read and dump any book one no longer wants.
The political battles are going on everywhere, don't know what it will all lead to. It seems that the leaders spend most of their time working on their election campaigns, going through primary campaigns, then battling through the main campaign, and it doesn't leave much time until they are busy getting ready for the next election. Macron and LePen seem to be polar opposites, one can only hope they have the best interests of France in mind. The same wish for all of us I suppose! The troubles with N. Korea seem to be escalating, and that leader seems very irrational.
I have heard that Germany has some excellent cancer treatment centers. They are allowed there to offer orthodox, alternative and complementary therapies all in the same place, sounds smart to me!
I would like to get some more pics of peonies as more blooms open, but we've had so much rain I may not be able to get there for a couple of days, since I have to cross a low-water bridge to do so. I would rather have rain than drought though.
Sorry your spirits have been low, it is probably because of all the sad news you have been hearing lately. It is hard to not internalize these things. And just picking up a newspaper or clicking a website brings the chaos of the world to us. I'm glad the flowers helped!
I will talk to you again soon, love,
Mary
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Hello Amanda,
Thank you for your post. It looks as though you and I are the only two Brits keeping the UK side up when it comes to posts. ChrisAsh and Merscotland seem to have stopped posting. It is such a pity. We have no idea what has happened to them.
Congratulations on your 50th birthday and I am glad you and your daughter had an enjoyable time.
Thank you for your information about a possible way to deal with eyebrow loss.
I do hope you have a lovely time in Singapore. We shall be thinking of you from May 8th and for ten nights. I think it will be really interesting if and Lou meet up.
I was interested to know that you go to a support group called Pink Sisters once a month. It is dreadful that someone of just twenty-one has had to go through breast cancer treatment. I do wish researchers would spend more time trying to find out why such young people are getting breast cancer when we are continually told it is a disease of old age.
I suppose you will have heard all the news this morning about the Cancer Drug Fund and how over a billion pounds has been spent in it to fund drugs that NICE will not approve because of cost. The conclusion seems to be that the money spent was not worth it as patients did not survive long and had awful side effects on the drugs. It is difficult to know what to think. I would want quality of life and not an end of life situation during which I am feeling terrible from the drugs. For me it would not be worth it. What do you think?
It is cold and dull here today in Exmouth. We badly need rain.
I hope you will be able to send some photographs to us from Singapore. I think May is going to be quiet on the thread if those on holiday want to take a break from cancer talk.
Love.
Sylvia xxxx
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Hello Mary,
I was intrigued by that PM you received. It was obviously some kind of scam. She was obviously up to no good. It is unbelievable the depths to which some people will sink. We all have to be so careful. I had a similar PM some years ago on here.
The book you mentioned Inside the Minds of History's Great Personalities sounds very interesting. I keep trying to find more time to read, as it is what I enjoy most, but it is very difficult finding that time.
I think that society wants everyone to conform and that it finds labels for those that will not play the game. So many people are easily brainwashed, but I am glad I am not one of them.
You must be getting very excited about your approaching cruise. I hope you make the most of every day of it. I hope you will be able to keep in touch, but I shall understand if you feel you need a break. I do appreciate the strong support that you give to everyone on the thread.
I do not like very much what is going on in world politics and I do not trust politicians. I have just been listening to the 1 pm news on BBC Radio 4 and the entire 45 minutes seemed to be devoted to three guests giving their opinions on Donald Trump, The First One Hundred Days. It was hard to reach a conclusion. I think he has been all over the place. He seems to be on a learning curve about life! I do wonder what all those ordinary people who voted for him are feeling now. I think he is surrounded by Neo-cons and his family when it comes to influence. I do wonder what he is going to do with North Korea.
I do wonder what is going to happen in France with their election. The two main traditional parties, the Conservatives and the Socialists, have been knocked out of the first round and the two that are going through do not have a party. Macron is a former international banker who did have a position in Hollande's government, but left and formed a movement En Marche. I think he is rather shallow. Marine Le Pen has little or no representation in Parliament and is always maligned as a racist, just because she wants to take France out of the EU (Frexit) and control immigration. I think this is just common sense because France, like the UK, is losing its identity and culture. We shall just have to see what happens. Who will be the next President of France? Who will be the next Prime Minister of the UK? Will there be a planet Earth if America decides to bomb North Korea?
That is about all for now. Again, many thanks for all you do. We are still getting plenty of views, but we need more posts. Things have gone very quiet.
All for now.
Love.
Sylvia xxxx
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Hello Rhonda,
I just wanted to say that I hope all goes well with your radiotherapy. Most women find it a lot easier than chemotherapy, but it is still a challenge. You are having seven weeks of it, if it is still five days a week. That will be tiring. The actual treatment is very short. You need to take care of your skin, keep yourself healthy, and rest when you need.
We shall all be thinking of you.
Love.
Sylvia xxxx
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Thank you Sylvia for thinking of me.Hopefully the state of the art machine in this center will minimize the damage.It is very precise.I bought cheap tank tops and aloe for My skin.They suggest aquafor but I think I will use Coconut oil. I can't imagine Aquafor would be better since it has chemicals in it.They also recommended Dove soap but Ixam using organic baby soap. I have an olive complexion so maybe I will get less damage since I don't have sensitive skin.I am going to take one day at a time and hope for the best.Have a nice weekend.
Love
Rhonda
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Hello Rhonda,
I just saw your post and was very interested in what you had to say and what you have been told.
I was glad to know that you are having radiotherapy on a state of the art machine. I was wondering whether where you are in New York they were using proton beam radiotherapy. We are years from it here and two centres, one in London and one in the North of the country are only just being built. Apparently it is a big undertaking.
I was advised to wash in aqueous cream or Simple soap. I have always used Dove unscented soap, but I was told not to use it during radiotherapy because it has metal in it. I do not use talcum powder but I was told it should not be used during radiotherapy, probably because of the metal in it as well. I think coconut oil is probably a good choice. I use it all the time on my face and find it really wonderful. I use Vita Coco Extra Virgin 100% raw cold pressed organic coconut oil. It is magical the way it is solid but melts as soon as you put it on your skin. I am sure it can do nothing but good.
You are right to take it one day at a time. You will find the time goes quickly as you are busy five days a week.
Please let us know how you get on and do not hesitate to ask anything you like.
We are heading into another Bank Holiday Monday this weekend, Spring Bank Holiday and then on May 29th we have Late Spring Bank Holiday. On top of Easter this is too many too close together.
I hope you have a nice weekend.
Love.
Sylvia xxxx
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Hello Everyone,
I've been working and trying to get past fatigue. This is the time of year that we have a lot of family obligations and holidays, so that's eating up most of my time and energy. I was able to go to a restorative yoga workshop on Friday after work, and I was glad I did. In order to do things on that night of the week, I have to drink coffee in the afternoon to keep myself going. I've been increasing my walking, and trying to do an hour a day. I'm hoping that helps with stamina.
Someone I know mentioned that I had "beat cancer." If that's true, it's interesting to me that I don't really feel that way. When I was done with treatment, I mostly felt apprehensive about recurrence, which is pretty common. What I'm trying to do is line up some things that I can look forward to, now that I'm improving physically.
I bought great seats for a concert at the Hollywood Bowl. We're hoping to make it to the Mid-State Paso Robles Fair, which we were not able to do last year. And I'm looking at Scotland for vacation in September. It will be nice to enjoy this Summer, compared to last year, when I felt apart from all the fun as I went through chemo.
I'm also looking forward to trying a few new recipes, which I need free time to do. This week, it's cilantro/lime chicken, Mediterranean pasta, and maybe some spring rolls. I'm also trying to get my eating habits back on track, after so many months of strange restrictions and cravings.
I'm still struggling with joint pain, but I started taking Glucosamine,which is helping a bit. Other than that, I'm hoping to work back up to my previous yoga conditioning - or any yoga conditioning for that matter. Oh, and I'm amused with this process of having hair and growing it out again. I used to have stick-straight, fine hair, and how it's very thick and wavy. From week to week, it's a new challenge. Right now it just wants to puff up and out.
I hope you're all feeling well today!
Pam
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Hello Pam,
It was nice to hear from you. It will take time for the fatigue to pass and you have to learn to pace yourself. Please do not overdo things. Try to get others to help you during this busy time for you. They have to realise what you have been through.
Exercise is good but do not overdo it. Look upon any exercise you do as something that will bring you relaxation and pleasure. Remember, too, that you are exercising when you do everyday things such as your household chores.
We all know that post-treatment and getting back to a more normal life, we have to learn to live with the fact that, despite all we do, the cancer can come back. We have to try to put this to the back of our mind and get on with our lives.
I think that it is a great idea to line up things to which you can look forward. It seems to me you are being very sensible and positive, so continue like that. I was interested to know that you are going to Scotland for a vacation. Keep thinking about that.
Let us know all about the recipes that you are trying out.
I was glad to know that taking Glucosamine is helping with the joint pain.
I do remember how strange it was watching my hair grow back after chemotherapy treatment.
Sending you very best wishes.
Sylvia xxxx
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Hello everyone, especially the regular group of posters,
I wanted to tell you that I have just received a PM from the sister of a woman recently diagnosed with IDC with triple negative receptors. Her sister is obviously very frightened, and we all know how this feels. She has a large tumour with some node involvement and is just about to be told what the stage etc. is and what treatment is proposed.
Most of you posting have just gone through all of this and two of you have still to finish treatment. I thought it would be nice if you came on board to support this woman who has two young children.
Many thanks.
Sylvia xxxx
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Hello Sylvia,
Of course I feel so supportive of the sister of your friend who has found a large TN tumor, and apparently the sister has had one too. I'm sure we all know how frightening this time is, I wonder if the first sister had been tested for the BRACA gene or another familial type of mutation? Perhaps they would like to come on here and talk if they want to, they will be among people who understand. It sounds as if the second sister is young, with 2 young children.
I am quite excited about the trip coming up, my sis-in-law emailed a long list of essentials she is packing 2 days ago, she is much more organized than I am. If I am not here much to check in while gone, it is not for lack of desire, but just a matter of time and being able to connect well online. I found out yesterday that we will have free internet in our stateroom, but only on one device at a time. So since we both have phones and tablets, we will have to juggle our usage, or pay a sizable fee, or just go out into a public area. We will figure it out as we go.
You mentioned that you listened to a BBC presentation of 3 guests giving their opinions on Donald Trump and his first Hundred Days in office. I will bet that none of the guests were favorable to him. It is somewhat amazing to me that all of the news about N. Korea seems to be about what Trump will do, why is he doing this, what did he say, oh dear dear. Nobody ever seems to talk about the young tyrant who is saber-rattling in N. Korea, the young tyrant who makes sure that his enormous military is strong and well-armed while the ordinary people are probably starving and known to be living without electricity and many modern conveniences. Nobody knows for sure because it is such a closed society. N. Korea is on record with the UN as being guilty of many human rights violations. Isn't he the one who is blustering and blowing up missiles in the Sea and frightening S. Korea and the whole area? Seoul, S. Korea is only 30 miles from the DMZ, I'm sure it's not very pleasant to have such a neighbor. I read this morning that Trump is getting the leaders of Thailand and Singapore on board to try and influence the actions of N. Korea. And has already been talking to China. I'm sure bombing a country is not anyone's first choice! I don't really know what else to say, the media is so against him that the voices of the people who hope he does well are quite squelched. And believe me, there are many people here who hope he does well, but they do not have the clout of the Hollywood actor, and the Primetime news anchors and pundits.
Here we have been having very heavy rain since Friday night. The streams and rivers are all flooded, and there are stories of people losing their lives in floods and tornadoes. People will keep on driving through flooded low spots, no matter how often they are told not to do so. We had one lady do so locally but she was pulled out before the car went under. The tornadoes are so destructive, there is nothing to be done about those, one must just try and get out of the way and hope for the best. Those were to the south and southwest of us this time, my sister-in-law was very near one in Texas, but escaped any harm. I heard 5 people were killed in that tornado.
So there is a week to go to find out about the French election, sounds like it's anyone's guess as to which way that will go, Macron or LePen. Last night I watched on TV one of the episodes of "The White Princess." It is a series about the mother of Henry VIII, her marriage to Henry VII, and all the goings-on around them. I'm sure it is heavily dramatized but it does make one wonder why anyone would want to be king. Every day is a struggle to keep from getting assassinated in one way or another, perhaps it is a little of that that persists in our modern leaders. They strive to win leadership but then someone is always trying to unseat them.
That's all for now, we will talk again soon, I do send best wishes to your friend and her sister.
Love, Mary
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Hello Mary,
I think you may have got a bit muddled about what I posted on the thread in reply to a PM I found to me this morning, unless you have read something else about this somewhere on another thread. I received a PM from the sister of a woman who has recently been diagnosed with IDC TNBC. I do not know these two women. The one who has been diagnosed is 42, has one child aged 6 and a baby of 18 months. The one diagnosed is frightened, too frightened to come on line, so her sister was sending me a PM asking for help to reassure the sister diagnosed that she is going to be alright.
I told her about myself and how I had a large tumour, one node affected, went through treatment and nearly 12 years later I am still alive and well.
Have you seen other information about this?
I shall write more later in response to your latest post.
Love.
Sylvia xxxx
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Hi, Pam
I can understand your battling to beat fatigue, I think it's great you are keeping up with walking. That will do you good. I have battled, actually still am, to get the things done I want to get done with the energy that I have. Energy is still considerably depleted on my end, but I am older than you; that plays a part as well, I'm sure. Yes, to many of us it seems as though other people act as though the cancer is all behind us, and we are supposed to just snap back to normal. That is what I hoped for, but not what I got. I am still learning to live within the new normal.
I also think it's great you are setting up plans to enjoy yourself this summer and fall. I think that's very important and also like having something pleasant on the horizon to anticipate. Do you have Scottish roots or are you just wanting to go there? My sis-in-law is going in a group to Ireland in December, I am not going on that one, too close to Christmas. I glad you have all these wonderful things to look forward to!
Your cooking experiments sound fun, I like doing that once in a while too. I made some spring rolls a while back, had not used the philo dough before and found that quite intimidating. I don't have the hang of it yet, but they tasted good. Some neighbors invited me to their home for dinner, of course it is a night when I will be on vacation. They were going to prepare Indian food, because I told them I had never had good Indian food. The wife is of Pakistani descent, and will have her mother make some of that food as well. I asked for a raincheck and hope it works out sometime.
I am interested in what you say about joint pain and Glucosamine. My knees started hurting a couple of months ago, diagnosis arthritis. Perhaps I will try glucosamine, I had a steroid shot in rt. knee a few days ago, it seems to have helped a little. I did get a very red face out of it!
You will find your hair going through a few different phases as it grows out. Mine was dyed blond before BC; after chemo it came back silvery-gray and curly. Now, almost 3 years later, it is wavy and has darkened quite a bit. Not sure what will happen next! I rather liked the silvery-gray. Enjoy your puffy hair! How are your brows and lashes?
Talk again soon, Mary
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Hello Kathy28A,
Thank you for your second PM. Reading what you have written shows me that you are doing everything you possibly can to get your sister through this cancer journey. Do not concentrate your thoughts on the triple negative aspect of your sister's breast cancer. The different kinds of receptor status with breast cancer all have their problems, whether it be hormonal breast cancer, which is the most common, triple positive and triple negative. All the doom and gloom that you can read about, I believe, comes from the fact that with triple negative you cannot be treated, after standard treatment, with anti-hormone oral drugs such as tamoxifen and Arimidex. These drugs have nasty side effects and I was glad when I finished my standard treatment of chemotherapy before surgery, surgery and radiotherapy to be free of all drugs and free to look after myself through natural ways and get myself back to normal.
As for the standard treatment, whatever the receptor status, patients get the same chemotherapy drugs, with little variation whilst going through chemotherapy.
As a fellow Brit, I need to tell you that with the NHS in its present state, you must fight your corner for your sister in a polite but assertive way. I feel that four weeks after the biopsies etc. is a long time to wait. I do hope that, after tomorrow, and the results of the full body MRI, that your sister will go promptly to chemotherapy treatment.
I think you are doing the right thing with regard to food. I would just say, perhaps, that with the vegetable juicing, I would cut down or cut out carrots and other vegetables high in sugar (these are the root vegetables). Concentrate on green vegetables, especially the cabbage family. If you need something to sweeten a little choose something such as blueberries. I think you are right on target with your eating. Everything you are doing is what we are doing on our thread. You should be very proud of this.
I do know that alternative doctors recommend high dose vitamin C infusions. I have not tried this.
Thank you for your kind words. I am sure you are going to do the very best for your sister. Please join us on the thread, as every post is a learning curve for someone, as well as providing support for you and your sister.
I hope you will not mind but I am going to post my reply to you on the thread so that everyone can share it and benefit from it.
If you would give me permission I would love to post your PM to me on the thread, because I think it is so impressive and that it will help others.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I can understand that you are getting quite excited about your trip. I am sure you will end up with everything you need for your trip in your case. I know that, if you can, you will keep in touch, but the most important thing is to enjoy your trip.
As for the programme about Donald Trump and the first 100 days, I do not think the views were too bad. I do tend to switch off if I think there is prejudice or bias. As for North Korea, I think everyone needs to talk rather than hurling lethal weapons.
I also think that there is not so much talk about Donald Trump at the moment here. The powers that be are too busy demonising Marine Le Pen and Jeremy Corbyn and the fists are out with the various parties begging for votes. I am sick and tired of people talking about Brexit and whether it should be 'hard' or 'soft'! Those words were not on the referendum sheet and Brexit means Brexit! I am not sure what Theresa May and Nicola Sturgeon are up to but I wish they would dress in a more professional manner. The cameras seem more interested in their short, tight skirts, legs and six inch stilettos, rather than anything coming out of their mouths. I find Marine Le Pen the most professional and the most articulate.
I can tell that you are getting some really rough weather. It has all just been on our news and it sounds horrific.
Those romanticised historical novels are quite interesting. There was a long series on the television recently and it made good viewing. The writer of those novels, is named Hillary Mantel, and lives in Budleigh Salterton, which is just five miles from Exmouth. I do find the history of the Tudors and later the Stuarts most interesting. There is a fascinating book by this local novelist entitled Wolf Hall. It is about Thomas Cromwell who rose from nothing to a high rank under Henry VIII (not to be confused with Oliver Cromwell).
That is about all for now. I did have another PM from the sister about her sister with breast cancer. I was very impressed with all she had been doing to help her and I have posted my reply to her on the thread so that everyone can benefit. I have asked her to come on the thread and also if I can post this second PM from her on our thread to help others and support her and her sister.
I do hope I shall hear from you again, Mary, before you leave for your great adventure. I want to ask you about rotator cuff tears or damage. A very elderly friend of mine had a fall, broke the radial bone in her arm and now has problems with her shoulder. A physiotherapist has told her the pain she has is probably from a rotator cuff tear but she has not had this verified by a scan or X-ray.
Thinking of you.
Love.
Sylvia xxxx
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Dear Sylvia,
Thank you so much for your message, you have really helped me and I am so grateful for all your support. Yes, my sister has a large tumour of 8cm (IDC triple negative) grade 3 in her left breast with lymph node involvement. It has been four weeks and we are waiting for a treatment plan to be put in place asap, I have been extremely concerned by the delays. I am starting to realise that she may need chemotherapy first to shrink the tumour but hopefully we will find out tomorrow. It has been very emotional for her having an 18 month year old baby and a 6 year old son, but she is keeping strong.
I have been trying to encourage her to have enough sleep, as sometimes she only has four or five hours sleep, and I have read that melatonin production at night time is very beneficial in overcoming this. Also the rest will help relax her a bit which will help with feelings of worry and anxiety. I have been encouraging her to have a plant based diet (focussing particularly on foods from the onion family and cabbage family). I have stuck a colourful piece of pink paper on the kitchen cupboard listing: turmeric, garlic, onion, spring onion, leeks (lightly steamed), shallots, broccoli, pak choi, savoy cabbage, all other cabbage, cauliflower, beetroot as organic foods that I am wanting have as often as possible with meals. I put this on the kitchen cupboard as sometimes with so much on her mind it can be easy to forget the important foods that can help beat this. And its almost a quick ready made check list before going shopping.
I have also been encouraging her to have moderate amounts of pineapple as it contains bromelain which I read has cancer fighting potential. Although I am conscious that she moderates foods high in sugar, to give good glycaemic control and not spike her insulin levels. I have also been reading day and night about the Gerson therapy and vegetable juicing, as she is likely to be low on vitamins and minerals right now. I asked her to supplement with vitamin D (10,000IU) as her vitamin D levels are likely to be low, and vitamin B12 as she is currently following a mainly vegan diet at present.
We are focussing on really optimising the fresh turmeric in vegetable juices, getting fresh garlic in there and all the goodness of foods that can help, without over cooking them. Although I am terribly disappointed with the wait for my sisters treatment plan, I am reading every book I possibly can to help her. I found 'your life in your hands' by Jane Plant very inspiring, and foods to fight cancer by Professor Beliveau and Dr Denis Gingras.
Tomorrow I would like to start doing deep breathing exercises with my sister to help her relax a bit. We have to do all we can to beat this. I really believe that the power of nutrition in combination with standard therapy will help get this under control. I pray that it will. I am going to read up on the different types of chemotherapy treatments available now, so that at least I have some idea of what they may offer her. We will all get though this together, one day at a time. Thank you for all your encouragement, guidance and support,
Much love, Kathy xxxxxx
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p.s I would like to thank everyone for giving me and my sister hope. I am so grateful. I was searching and searching last night online, and google searching wasn't helping me, but then I found you all, and I got my fighting spirit back for me and my sister xxxx
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Maryna - wishing you a safe and wonderful trip to Europe. Not sure what you are like, but I always find myself to be a bit apprehensive during the preparation for a trip, but once I am on my way, I totally relax into it and embrace each new and different experience. Hoping that you will fully enjoy your vacation and take time for rest and recreation - look forward to hearing about it when you return. I am praying that the cortisone shot in your knee will work wonders for you and help your mobility during your travels. Have a great time!!!
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Adagio,
I am completely in sync with you, I do not like the days before a trip; the packing etc. I like when I am finally away and it's too late to go back for something I forgot! I like to finally be away and feel as though I am lifting away from all below and behind.
Having said that, I look at my computer this morning and what do I see......ALERT! Terror alert for travelers to Europe, it came out yesterday. No specific threat, they just posted an alert because travel will get busier and they want people to know the terrorists are out there, it goes till September 1. Oh well, it's a crazy world!
The cortisone shot has helped a little, I had it Friday; an orthopedic nurse I know said it usually take at least a week for the shot to really kick in, so I'm hoping for more of an effect.
Okay, I must go obsess over minutiae a bit more! Thanks for well wishes, talk to you again soon,
Mary
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Hello Sylvia,
Ugh, politics. I will be glad to not think about it for a few days, I thought it was funny what you said about Theresa and Nicola (if I may be familiar), and their short skirts. The media will concentrate on anything but the meat of a story, we seldom get that. We get the reporters' opinions and the odd personal comments; very seldom do they ever comment on what a male politician is wearing.
There is a woman named Margaret George who has written several of the fictionalized history books, they are quite good. She wrote one on Henry VIII, and one on his and Anne Boleyn's daughter Elizabeth. She wrote one on Mary, Queen of Scots; also one on Cleopatra, and one on Helen of Troy. Maybe more, not sure. I enjoyed those books, great escape reading, and one learns some history at the same time.
Here is what I have learned in the last few years about rotator cuff tears. About 3 years ago, the last month of my chemo, I was attempting to saw off a piece of a small tree that had fallen in the road. I felt a small tug in my upper arm and thought nothing of it. That night I was overcome with great, flaring pain in my shoulder and arm. I took pain pills finally, and leaned on ice bags it was awful. After that I couldn't drive, I couldn't carry a bag of grocery with that arm for a couple of months without the very large pain. Pretty much couldn't use the arm without awful pain. Doc ordered an MRI, the prognosis was partial rotator cuff tear, nobody seemed very impressed by it. But it was assumed the awful flaring pain was from the neuropathy combined with the injury. I was told it would get better on its' own, or I could do therapy. It was way too painful for therapy. So I put up with it and slowly I got back to driving, and being able to carry light weight on the arm, eventually went into therapy and after a few months went back to doc and said the pain is not better, it's worse. So he ordered an MRI and prognosis was it was worse, but not a full tear. So now they say it won't get better on its' own, I can put up with it or have surgery. Since it is a long recovery I opted to wait, and put up with it. At some point I was at my BC surgeon's office, and I told her about it and the day I injured it. She said in her opinion a rotator cuff tear was not caused by a single incident but instead by gradual wear. I was adamant, and still believed my story. So fast forward a year or so, and I am in Aruba and go kayaking. I had hideous pain for a while in the upper arm/shoulder again with exertion, and decided to go check out doing something about it. That surgeon ordered another MRI, and said rotator cuff was a little worse, and I also have a bicep tear, which he could also repair. Nobody ever said anything about a bicep tear before, and I now think that is probably what I injured that day. That's what it felt like, something giving away. I'm not even sure what the point of my story is, perhaps that the rotator cuff had been degrading for a while, and it was the muscle tear that was so acute, and nobody diagnosed it! It still hurts, I still haven't done anything about it, and that's where I am.
To be continued.......
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Sylvia,
Continuing here. I don't know how elderly your friend is, I don't know if the docs would recommend surgery for her. It is rather a long recovery, one is immobilized for a while, and then 6 weeks of physical therapy which I am told is very painful. That is what has stopped me from proceeding, although since the kayak adventure I have been thinking about it more. It's possible they would recommend some physical therapy for her, and see if she can tolerate it. For myself, living alone it is hard to swallow not having the use of my right arm for that long! And the pain right now is minor as long as I don't overdo things. (Which I usually do)
That's all for now, hope that helped.
Talk soon, love, Mary
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Hello Kathy28A (Kathy),
I want to say thank you for coming on the thread to talk to us so that we can help your sister through her cancer journey.
I do hope you will have obtained a treatment plan today as four weeks of waiting after diagnosis must be agony for you. I do hope that the medical team will decide to do the chemotherapy first, as that will shrink it and make surgery easier. It must be so difficult for your sister having all this swirling around in her head and having to look after a six-year old son and an eighteen-month old baby.
Sleep is very important for her and she certainly needs to have more than four or five hours of it. The production of melatonin during sleeping hours is very important for health and the immune system in general. During chemotherapy she will feel very tired and will need to take extra rest and sleep. She needs to get into a routine of keeping well hydrated, getting plenty of rest and looking forward during her treatment. I would think the chemotherapy would last about six months and the fatigue builds up as time goes by. Women here say that weekly chemotherapy is a bit better than having it every three weeks.
She will need to try to eat a balanced diet and probably small meals at a time, in addition to any juiced vegetables. She will need to keep her strength up. Little and often is the best during chemotherapy.
She will need to try to live as normally as possible, have some leisurely walks, have some fun and learn to laugh a little, be optimistic and keep looking forward. Stress is not good for anyone, let alone breast cancer patients, so it would be good if she could avoid negative stress.
She may want to join a group so that she can talk about her feelings and there should be relaxation sessions of aromatherapy etc. if she feels like it. There may be a support group at the hospital to which you can both go.
Gradually together you will sort out what you need and what you do not need.
Always be in control of what is being decided for you. Take great care.
Love.
Sylvia xxxx
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