Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia,
I tried acupuncture once at Sloan where I felt comfortable since It was during chemotherapy.It was very relaxing but the person I went to told me since I was having chemo after the acupuncture he wouldn't focus on the fingertips since it increased circulation of the drugs I would
Be getting.I am going to try it again with hope it will help the pins and needles I have in my fingertips. Today Iam going for a massage with my daughter.Have a nice weekend!
Rhond
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Hi Adagio,
Lovely to hear from you. Many thanks for updating with your experience. It reassures me that it is not to worry. But as you know it does take time for not to worry. I am experiencing pain all the time. It is around 10 days now. It does not bother any of my hand movement.
However I spoke to one of my friend who is a cancer surgeon for lungs thinks it is costocondrities which is a inflammation of the cartilage. That has put my mind at rest but it is a good idea just to get it checked.
Love nilima
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Hi Sylvia, Mary and all
My college friends and I gathered together after 13 years. It was a really great event as we all live far away from each other.
In two days I have my six month check up. I hope everything goes well and I come here with some good news.
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Happy Sunday Everyone,
Hanieh, It's good to see you again. You are so lovely and photogenic. I'm wishing you great news at your check-up.
Gina, One of my favorite TV shows is "Parts Unknown," with Tony Bourdain, a former chef and now full-time world traveler. I like it because he tries to understand the culture everywhere he goes. One of my favorite episodes is when he went to Manila: http://www.cnn.com/2016/04/22/travel/anthony-bourd... To me, it's about music, eating, and most of all, laughter - combating adversity with a sense of humor. If you have ever seen this show, and this episode, I would love to hear what you think. (And Hanieh, he went to Iran as well, and that is a beautiful episode that I've watched more than once - have you seen it?)
Mary, When I post here, I stop and use the "ctrl-c" command, (copy) often over what I write. That way if I lose it, I can just use the "ctrl-v" command, (paste) to restore it if I lose it!
Sylvia, it's very sobering to hear of recurrences and worse. This week, I had a couple of bad pieces of news from others. I was pretty shaken. One of them might be OK, but though I am strong, it hits me pretty hard.
Still, I had a pretty nice weekend, even if I couldn't do everything that I wanted to do. I made Martha Stewart's "Mediterranean chickpea salad," and Blue Apron recipes: "Spicy shrimp curry with cabbage, Moroccan chicken with prunes, and Spicy chipotle meatloaf," in addition to smoothies with chard and kale. I realize that smoothies aren't the best use of the blueberries and strawberries that we got from the farmer's market, but right now- post-radiation, my body is screaming for them.
Marias, I haven't seen you here lately, and hope all is well. I asked my Colombiano husband to scan our pictures from our 1997 visit to Cartegena. I'm afraid the quality is terrible, but I'll post them anyway. Just know that the originals looked a lot better than this!
Dancing on top of the fort. We took a trip on the "party bus."
The rainfall was incredible and intense.
We took a trip out to one of the islands, and stayed a couple of days.
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Hi Lilyp6,
Like Gina, I am also from Philippines and I also watched Anthony Bourdain's show before. I personally liked watching it. You can see a lot of interesting places and their way of life.
You are right, Filipino people can still smile amidst the adversities we are dealt with in life. We bounce back from every possible things thrown in our path with a positive outlook in life. We love to sing and dance. Maybe it was what kept us going and moving forward even those who are very less fortunate can still put a smile to their faces.
Very nice photos of Cartegena. It looks like a very interesting place to visit.
Best regards,
Lou
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Hi Lou, That's it exactly. Bouncing back with a smile, and hopefully finding a way to sing and dance too. That's a very inspiring mentality to me right now. Thanks for your kind message.
Pam
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Hello Rhonda,
I was glad to know that you found acupuncture relaxing. I have not yet found anyone who has negative comments on it.
I hope you enjoyed your massage.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post and for the photographs of your get together with your college friends. You must have had a lot to say to one another after thirteen years.
I do hope all goes well in two days time when you have your six monthly check up. We shall all look forward to hearing from you with good news.
Fond thoughts.
Sylvia xxxx
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Hello Pam,
Thank you for your post. It certainly is very sobering and makes you realise that you can never take anything for granted. All we can do is take each day at a time and live it to the full.
It sounds as though you had a busy weekend with all that cooking.
I am concerned that we have not heard from Marias in Colombia as she is still going through chemotherapy. I hope she is not having problems with this. I have sent her a short PM.
Thank you for the interesting photographs.
I hope you are keeping well.
Fond thoughts.
Sylvia xxxx
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Hello Sam52,
I am just popping in to say that I keep you in my thoughts. The year 2009 when we met each other on the thread when we were sorting out our overactive parathyroid problems, will always stay with me. I was so interested to read all that information about an overactive parathyroid and possible connection with the development of breast cancer.
You must be 16 years from diagnosis of your hormonal breast cancer. Congratulations.
I also wanted to say Happy Birthday because I remember your birthday is in March. I hope all is well with you and your son. Are you still in London?
Love.
Sylvia xxxx
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Hello Michael (Chatterbox),
I wanted to send best wishes to you because I know that March is a special time because I think your deceased wife's birthday was March 12th or thereabouts. I went to look at the Janette Collins Foundation that you set up in her memory after her death from TNBC. I was surprised to find that it does not seem to exist. Did you run into problems or did you decide to shut it down?
I do hope you are in good health and I hope that we do hear from you. We miss you and all the information you used to post on the thread.
Best wishes.
Sylvia
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Hello everyone,
I hope you are all doing fine.
Kath, in Australia, how are you doing post-treatment?
Amanda, Maggie and Chris in the UK, how are you all doing?
Nili in the UK, how are things going with you?
Lou in Singapore, how is the chemotherapy going? I hope you are sailing through it.
Gina in the Philippines, how are you doing post-treatment? Did you start back to work?
Mary, I think you have had a weekend off the thread. We all need that. I have read through all the Chris Woollams information and the post on a new thread from the Moderators about soy. Have you managed to read it?
Best wishes to everybody. I hope I have not missed anyone out. If so, please shout.
Sylvia xxxx
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HI, Sylvia,
Sorry to say I can't find the article on Soy, by the Moderators. I did see it on the day you first mentioned it and was going to return later. I don't see it now.
I did take the weekend off, but it was not for anything pleasant. I don't know if I mentioned last week that I had hurt my knee about 10 days ago. I had been doing gentle strengthening exercises and taking some stretching classes for the last several months while at the center. Last week after the knee did not seem to be getting better, I stopped back in at the center and talked to one of the trainer/therapists. He said to rest, ice it a couple of times a day and give it a little time. So that's what I did over the weekend. I was not in a good state of mind, and did not feel as if I had anything positive to offer anyone, actually. Don't like getting that way, but I feel as if my mobility is just getting more and more compromised no matter what I do to try to improve it. I thought by exercising at the center where there are professional therapists/trainers I would be operating at a safe level, but now I don't know for sure what to do. There just seems to not be much guidance out there. Everywhere I turn people are telling me to exercise to beat cancer, heart disease, diabetes, arthritis etc. etc. The quandary arises because it's very hard for me to exercise efficiently. My neuropathy stops me from walking very far, and apparently other body parts are going to cause problems for me in other respects, and I haven't found anyone who seems to have a clue on how I could safely proceed. My knee seems a little better, but I might be calling my doc today, just to ask him over the phone what he thinks.
Enough of that. I haven't had the heart to recreate my lost post on Chris Woollams'; my method is to read over his posts and then after that compose a message here. I leave his posts open on computer so I can refer back and forth. Most of the time I compose my messages on my old PC, I can leave as many discussions open as I please and see them easily. Thanks for the hint about using Word, that's a very good idea. I usually only lose my messages if I accidentally hit something wrong, like the Delete key! Pam also has a good idea, about copying as you go. I sometimes post on my tablet, but I agree with Sylvia, I get tired of hitting little buttons; I still like my old keyboard.
I did want to link this, and see what you think:
http://www.canceractive.com/cancer-active-page-lin...
Somewhere in my reading I have seen comments that the UK might be getting more lenient on the use of this, but I think it's still in the petitioning phase. Where I live it is illegal, unless you have severe seizures or ALS, I believe. I have a funny story; about 2 weeks ago, I went for a massage. My regular licensed massage therapist is out of commission at the moment, so I got a male LMT. He talked almost non-stop about the benefits of cannabis oil, smoking cannabis, eating it and so on. I mentioned that it's illegal here, he said not if you get the oil online and without the THC. I checked this out later and it's not true. Still illegal. He also mentioned he could get rid of my cellulite and some of my facial wrinkles, without my asking for his opinion! I will be sure not to go to him again, I don't get a massage to hear about my body flaws, I am all too aware of them! I would be willing to check out the oil, if I get somewhere that has it for sale legally.
I did look at the article you linked referring to Med. Diet, I think there is no doubt it is the best way for us to eat. And it includes so much good food that it is not a hardship. It also refers to alcohol being a no-no even in Italy which is known to be famous for wine. The consensus seems to be that alcohol is very bad for breast cancer, but the reports never say why, is it because of the sugar content? It's puzzling, I know many women that drink regularly, but have never had any kind of cancer. Several of the women I know who have had BC are teetotalers, although one of them drinks a lot of Diet Coke, which is probably even worse.
I am going to close this now before I hit something wrong!
Talk to you again soon, Mary
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Hi Gina,
Sorry for a very late reply.
Keeping myself busy takes my mind off from watching every possible side effects. I love crafting a lot. It is my best option as a stress reliever.
Today, we decided to crossover Malaysia for a change. I try to keep my life as normal as possible on my good days.
Yes, we need to find ways and means to stay alive and keep BC out of the picture for our loved ones.
It looks like you had a great time in Singapore even though it was unplanned.
You are right, I have never been to Caramoan and I hope to visit it one day. My mother was from Camarines Sur and I studied in Naga City in college. My father is from Albay and I grew up there. There are a lot of beautiful places to visit in Bicol.
How are you after your PFC? Any aches and pains? How's your energy level?
Best regards,
Lou
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Hi Sylvia,
Thank you for asking
My down days is Day 3-4 after infusion. On those days, I mostly stay in bed and rest.
I am going to see my MO tomorrow to do a full blood test then chemo the next day. With the weekly regimen I see my MO only after every 4 weeks. But they do blood test before chemo.
Best regards,
Lou
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Hi, Lou,
Hope your blood test and chemo go well, you are making good progress!
Glad to see you, I was missing our friends in the Philippines, Gina has been absent too.
I will talk to you later, Mary
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Hi Rhonda,
I did make a spaghetti squash, it was so good! Actually still is, I have leftovers and put them in lots of things. The hard part is cutting it in half.
I wanted to tell you that I get acupuncture regularly; my favorite thing it does is amp up my energy level, some times more than others, depending on the points he needles. That seems to make everything feel better, when my energy is up.
Only about a week till your surgery, are you still having the pain and swelling?
Talk soon, Mary
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Hello Mary,
Thank you for your very interesting post. I shall reply in more detail tomorrow.
The Soy thread has moved down the list. The link to it is:
https://community.breastcancer.org/forum/72/topics/853352?page=1#idx_1
Talk to you tomorrow.
Fond thoughts.
Sylvia xxxx
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Hi Mary,
When I make spaghetti squash I bake it whole then cut it.It seems to work fine.That is interesting that you get energized-I am feeling really tired lately.As far as the pain and swelling it has lessened.I have my surgeon appointment on Friday and much daughter is taking me.My cousin is coming from India and she will meet us
SLoan and she will ride home with us.We are going to truck and cook some Indian food when she comes.Lately everything I eat tastes salty,so I hope spicy will taste good! Expecting lots of snow and high winds tomorrow.
I want spring!Did you have any neuropathy from chemo?
I was wondering if acupuncture helped.Talk to you soon.
Rhond
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Hi Sylvia and all other lovely ladies,
It looks like I lost my post which I did on Sunday. I have an appointment today to see my oncologist let's see what he has to say. Meanwhile I have spoken to my friend who says nothing to worry. He is a lung cancer surgeon. Not read through other messages today just very anxious.
Sylvia also needed to ask which soya product you buy in the UK?
Lots of love to all and take good care of yourself
Nilima
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Hi, Hanieh,
Thanks for posting pics, how nice for you to see all your friends together. I'm sure there was lots to talk about! I have seen the young lady with the child in other pics with you, and you are all so beautiful.
So is today the day for your for your check-up or was it yesterday? I'm not sure because of the time difference. I think you have a lot of years in front of you! Let us know what happens.
Talk to you again soon, love, Mary
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Hi, Pam
Thanks for the hint on "copying as I go", when composing long epistles! That sounds like it would work well too.
It sounds as if you have your appetite back, the food you were cooking sounds delicious. And it sounds as if your taste buds are craving spicy food, cooled down with smoothies!
I used to watch Anthony Bourdain's show, but haven't seen it in a while and wasn't sure it was still on. I remember watching it and thinking what a great job he had, traveling around to exotic places and eating so many different foods, and I noticed they usually drank heartily too. I will look around for it. A lot of the channels have moved, it's probably somewhere!
I hear the cardinals calling outside my window even though it's still dark, they are always the first birds to the feeders and the last birds to leave at night. They are telling me they want to be fed.
I don't think I am used to time change yet, on the news last night the weather-man said it takes 6 days to adjust to a one-hour time change. Not there yet! What do you think of "spring forward"?
Talk soon, thanks for posting happy pics, Mary
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Hi, Adagio,
I injured my knee about 10 days ago so yesterday I was wearing a knee brace, and saw our priest at the post office when I drove up. He was waiting outside his car to say hello, as I was slowly moving my knee out of my truck door. I told him I had messed up my knee, and he said "oh I am wearing a knee brace too!" So perhaps this is part of the penance of our Lenten journey?? Ugh.
I am faithful to my acupuncture doc, and go regularly. He puts needles in my lower legs, left arm, ears, face, forehead and top of head. I usually get a very good energy boost on the way home and it lasts for days. And yes, the relaxation while the needles are in is wonderful. I have not received accupressure either, but have tried it on myself; not enough to say what I think of it. I am a rather impatient person, and usually want fast results. I am trying to soak up the lesson that these things all take time, sometimes a lot of it to see results. I am not sure what the needles in the ears are for either, I will ask him tomorrow when I see him.
I am a coffee drinker too, and find it necessary for things to move well in the morning, if you know what I mean. I am caffeine-sensitive, so only drink it in the morning. I have tried hot tea to take the place of morning coffee, it is just not the same, even the strong English breakfast tea. I will join you in being a bit of a rebel, if all of these experiences of the last few years have taught me anything it is that life is short no matter what we do, and we might as well have our small pleasures.
I will talk to you again soon, Adagio!
Mary
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HI, Rhonda,
Baking the squash before cutting it does seem like it would make the cutting job much easier, I thought I was supposed to clear the seeds out first, but probably doesn't make a bit of difference. That would definitely work though, the hard shell was very soft after cooking, I could tear it with my hands.
Glad you are meeting with your surgeon, and getting that all squared away. And cooking Indian food with your cousin sounds great, can I come?
I have really never had good Indian food, I have only eaten in a couple of Indian restaurants and was underwhelmed, I don't think they were top-notch. One of these days! On second thought, I will have to postpone my visit, because I did hear about your approaching blizzard. It missed us here, we just got very high winds and a little dusting of snow. Take care and hope you get to keep your power on, so you can keep cooking!Yes, I have neuropathy from chemo, to a troubling degree. It weakens my legs, and causes tingling and shooting pains in feet and legs, sometimes worse than others. My acupuncture doc does needle me for it, at some times more than others. I really prefer it when he concentrates on the energy points, because that is just an overall better feeling for me. Sometimes when he concentrates on neuropathy points, it seems to cause an increase in the tingling, burning feelings. He says that is good, because it means the nerves are awake and trying to heal. I just know I am in this body, and I know what it feels like. I think he is thinking long-range results and I am dealing with the present! I have been going to him for about 2 years now, I look at my visits as maintenance and I am glad he's young so I can keep going to him for a while longer!
Hope the snow is bearable, and not too much, it should be the final gasp of winter, right?
Talk to you soon, Mary
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Hi Mary,
Blood works are fine and I am all set for chemo #5 tomorrow.
So far my constant SE is ringing in my ears. My MO said if I developed severe neuropathy then they will stop my chemo treatment. I am hoping to finish all 12 to be able to feel safe but then again there is no guarantee, only time will tell.
Maybe Gina is busy at the moment.
I read your post about coffee. I am also a coffee drinker and I know what you mean. My day cannot start without it. I am not sure how I am going to transition to green tea later. I will cross the bridge when I get there. Right now my top most concern is to finish my chemo
You like Indian food? We cooked Indian food about 2-3 times a week. But right now I am eating it without chilli powder because my stomach cannot handle it. You can join us. 😊
Best regards,
Lou
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Hello Nili,
You ask about which soy products I have. I usually buy fermented products, such as Sojade organic plain unsweetened live culture yoghurt, Provamel organic plain unsweetened live culture yoghurt. These are very good for keeping the gut healthy. I also buy tempeh which is fermented soy. It comes in a square pack, frozen or chilled, and I cut it into small squares, fry it in extra virgin olive oil, along with other vegetables and serve as a stirfry on a bed of high protein whole wheat pasta. I also buy miso paste in a jar and sometimes put some into soup, or have as a hot drink. Miso is a mixture of fermented soy and another product, such as rice or barley.
I do not buy soy milk drink and prefer Alpro almond drink, enriched with calcium and vitamins.
I steer clear of all dairy products.
I hope this helps.
I hope all goes well when you see your oncologist today.
Fond thoughts.
Sylvia xxxx
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Hello Nili, again,
I forgot to say when mentioning the soy products that I buy, that I also regularly buy packs of fresh edame soy beans. I eat them as a vegetable with fish and other brightly coloured vegetables. They are a lovely green colour. Soy beans are one of the best sources of protein that you can have and they are low in fat. It is quite easy to eat them as they are in a salad.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I just had to tell you that at long last I have managed to restore my subscription to Chris Woollams email. I found one in my inbox this afternoon, dated March 14th. This is a new email that I have not yet had a chance to read. I still have not analysed the last one dated March 3rd. Raymond and I are both receiving his emails now and we forward them on to as many people as we can whom we think will be interested. How are you getting on with them?
I do hope your pains will ease. Please let me know how you get on.
This country is upside down and inside out. The government won through last night over the House of Lords and Article 50 will be activated on Monday March 27th.
It should have been activated today! I do not know why they keep delaying.
Now Nicola Sturgeon, First Minister of Scotland, wants to activate another independence referendum for Scotland. They have already had one and the majority vote was to stay with the UK. Now she wants to try to separate again and join up with the EU. That hardly represents Scottish independence! Watch this space.
That is all for now. Keep well and keep in touch.
Love.
Sylvia xxxx
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Hi Sylvia/all
Hope everyone is doing ok.
Lily/ Hanieh your photos are so lovely I really do enjoy travelling and learning of other cultures and loved to see your beautiful photos.
Having continually pestered the hospital I finally, after 4 weeks got my results back from the spin and hip X-ray . They are all ok so I assume that the aches and pains are the after effects of the chemo. My mammogram was also clear. I have however had a few sleepless night after feeling a lump on my mastectomy side, the lump was by my breast bone and about the size of a bean. I went today for an appointment with the consultant and then an ultrasound. It turned out that it is just a piece of fat iwhich is on top of the bone. This piece of fat has caused me a lot of stress so I feel extremely relieved tonight .
I have tried to catch up on a few posts and read that it is beneficial for us to be eating a few soya products in our diet. I always thought that soy is bad for those who have had bc so I'm a bit confused. Recently I read that a mixture of turmeric , lemon, honey and apple cider vinegar is very beneficial due to anti inflammatory properties , just a spoonful a day . I wonder has anyone else heard of this?
Wishing you all a lovely evening
Amanda
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Hello Amanda,
It was nice to hear from you.
I was glad to read that all is well with you and that everything is clear.
It will take a lot of time for your body to recover from the toxic effects of chemotherapy and radiotherapy.
The information about soy was put on the TNBC thread by the Moderators. With all the information that is going around you just have to make up your own mind about each piece of information and do what you like. We have to remember that there are all different powerful organisations trying to make you believe what they believe. Most of it is money orientated. We have to remember that the meat industry is powerful, the dairy industry is powerful, and let us not forget Big Pharma and orthodox medicine.
I eat soy products and they do not seem to be doing me any harm and I think that organic live culture plain unsweetened yoghurt must be good for the gut, if we believe all we are told about the importance of a healthy gut and how an unhealthy one is at the base of poor health and chronic illnesses.
I do not eat meat or dairy products because I believe they are adulterated with growth hormones and antibiotics.
As I have said before, I eat only fermented soy products and fresh soy beans.
I do understand how constantly being bombarded with contradictory information is very confusing, so you have to decide what you will believe and what you will not believe. The most important is to have a varied diet based on foods in as natural a state as possible and stay away from all the junk, and there is an awful lot of it!
You mentioned the mixture of turmeric, lemon, honey and apple cider vinegar. I have not heard of it but every day someone is promoting something new. Turmeric is always in the news. I have it from time to time but I buy it as a fresh root. I tend to cut it up and cook it with carrots and fresh ginger. I stay away from sugar, so I would not eat honey, but other people do as they consider it a natural product. It will still act on your body as sugar and make your blood sugar go up. Cancer loves sugar, so we are told. As for apple cider vinegar, I do not know what to say, but in the past I have read to stay away from vinegar and all pickled products. You can see what I mean about just making up your own mind.
That is about all for now, Amanda, but thank you for helping keep up the Brit's side of the thread.
Fond thoughts.
Sylvia xxxx
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