Calling all triple negative breast cancer patients in the UK
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Hello adagio,
It was nice to see you back on the thread. I need to take a break but I shall talk later.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
I agree with wanting to get surgery as soon as possible .
I hope I get some answers after Wednesday.
Rhond
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HI, Sylvia,
My husband was very interested in WWII history, we watched a lot of documentaries on it; I found it very interesting as well. All of Europe went through hell during WWII, probably good you don't remember it too much. I can see that the rubble and destruction would have seemed normal to you as a child, if that's where you were raised. Perhaps people seemed to be healthier on the rations because they were eating less, and weren't able to get all the junk food available now.
I had 5 uncles who served in Europe during that war, most of them had clerical duties. None of them ever talked about the war years. My father-in-law was a Marine who served in the South Pacific, He also would not talk about it at all, they are all gone now, and there are not many WWII veterans left alive here. My father did not serve, he stayed home and tended to the family farm since his father was aging. He was the youngest of a large family and the government could not ask all the men in a family to serve, some had to stay behind and produce food and goods.
Sadly, it does seem that we as countries and nations seem to all pull together only if there is a big disaster, once that memory fades we once again forget and begin to bicker about everything.
As for as I can see about the Speaker of the House of Commons John Bercow, it looks like he is the typical weak-kneed politician; as for his opinion about Trump, it sounds like he is responding to media headlines and has probably never actually had an original thought about the situation. I see he voted "Remain", and is probably working against Brexit behind the scenes. Does he have an elected position or is he just always around?
"The Fibs of History" does sound interesting, History is written by the victors, I have always heard that. I have also heard that the history children are taught now is not always the same as I learned in school. There is much more political correctness now, and it has worked its' way into textbooks and teachers' workbooks.
My massage was very good, except she applied a bit too much pressure to my injured shoulder; it started hurting later that evening and is just now dying down somewhat. I will be glad when my usual masseuse is back to work, she has opened a new shop and will start again in March.
Do you have gum disease? Are the gums bleeding? I had that years ago, and when I would go to my dentist he would ignore it. One day I started with a new dentist and he looked in my mouth and said the first thing we have to do is clean up this mouth. I had to swish a liquid for a couple of months several times a day, and really work with floss and brushing. Once I had that solved, he began work on crowns where I needed them etc. I had to have a very deep cleaning from a gum doc, a periodontist, probably about 7 years ago, I still see him at intervals, alternating visits with my dentist. It is very good to get the gum problem under control, it can cause a lot of trouble.
Speaking of Epsom salts, a lady told me about a wonderful bath mixture. She takes a resealable plastic bag, puts in 2 cup of Epsom salts, 1 tbsp. olive oil or coconut oil, 2 drops each ginger essential oil, lavender essential oil, tea tree oil, and 1/2 Cup baking soda. Roll in around in your hands and put it in a tub as it fills with warm water to your liking and soak for at least 20-40 minutes. I had a bath and it was wonderful! IMPORTANT: Put a non-slip mat in the tub, as the oils make things slippery! It is incredibly relaxing, and is supposedly pulling toxins out of your body while you relax. The only down side is cleaning the oil out of the tub afterwards.
I know what you mean about needing more time in the day, the days do seem to fly by so quickly.
I shall talk to you again soon!
Love, Mary
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Hello Sylvia and all of u.
On Monday 6 and Tuesday 7 I had my FAC chemotherapy, with the infuser. I have felt good since then, a bit tired, my brother moved to live with me and brought almost everything from his house with him. I am very grateful to your company and his beautiful gesture of moving from city to be with me on this path a little uncertain.
My mom, brother and I, we have been adjusting things in my apartment, we only need to hang the pictures and accommodate some books and mission accomplished.
To give us a break we went to Popayan to a little house of a friend of mine who worked at university as a yoga teacher, and gave therapeutic massage and acupuncture. We went with a friend who is also a psychologist and whose husband died 3 months ago of lung cancer.
We spend very rich and I reign as I do not do it, I forget that I have this disease. Popayan is the land of my ancentros, a city that was indigenous territory before the arrival of the Spaniards, and soon was an important colonial city. Popayan is in the mountain range of the Andes a little after the place where the central and western mountain ranges begin to separate, is a small town at 1,760 meters above sea level. Its climate is 14-18 degrees average so it is super nice.
we played a game called "tren mexicano" is like domino game, and we had a lot of fun with this. https://en.wikipedia.org/wiki/Mexican_Train
I have arrived with more force, I have not read your post this week. I have to do it calmly for what is in English and I sometimes find it hard to understand. I share a page of audio books, which can serve as an excellent company. Http://www.loyalbooks.com/Top_100
I feel that the tumor does not diminish with chemotherapy but it grows and expands through my right breast, I do not know if I'm a woman of little faith .... but sometimes I get discouraged and feel a heat in the shoulder, under the arm And in the womb. Sometimes I'm very scared .... but hey it's better to be distracted ... this afternoon comes the yoga teacher, for the PICC catheter I'm not doing exercises that force you to support your arm.
Receive a warm and warm hug.
Marias
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Hi Sylvia, Mary and all
Sylvia, I don't know the exact details of my friend's lymph node involvement but I'm sure it wasn't sentinel node as the involvement was discovered by sono. Maybe more than one lymph is involved. Now, I have managed to somehow get control of my emotions about her. I hope nobody experiences such a thing.
Thank you so much Sylvia for all the worthy information. I've started taking flaxseed. By the way, I found an article on the Internet about the efficacy of triptorelin(dipherline ) injections on TNBC . Yet, it is mainly used to preserve fertility for young patients. Again, the issue of dipherline! I wish there were an international protocol for bc treatment.
Mary, we had some snow in Tehran. It was really lovely. As you said we have much in common.
adagio, happy to hear from you again. I'm sorry for what happened to your husband.
marias, I love your picture. Keep your strength. These days will come to an end and you will be healthy again.
To all here, wish you health, wealth and long lasting happiness.
Sorry if I can't remember all the names here to mention. English is far from my mother tongue and my mind is really weak in remembering the names even in Persian let alone English. But you are all in my heart and prayers.
Love
Hanieh
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HI, Pam,
Good to see you here again! You are really getting through your radiation, good for you, doesn't sound like it is too bad. I didn't have rads, so can't really compare notes; I have heard it makes people tired. But not like chemo, thank goodness.
I think it's a great idea to seek out a lymphedema therapist when you finish. When I finished chemo my MO sent me to such a therapist, because I complained of a lot of pain, and my shoulder and upper arm hurt badly. It turned out to be a rotator cuff injury aggravated by neuropathy. I went to therapy anyway, and worked for what seemed like a long time. The therapist said I didn't have lymphedema. Like Sylvia, I think my upper right arm is just a teeny bit bigger than the left, I can tell it if I have on a tightish sleeve. Any exercise is good when you are finished treatment, and they will be gentle with you in therapy. It will also be reassuring to you when they say you don't have it! Good thinking.
You are very wise to listen to Sylvia's diet advice, she is so good with that. I also put organic flax in my oatmeal every morning, not sure how many grams, I guess I should be more precise. You are very good also with your routine, that is amazing. I don't think I ever washed my wig. Before you think I am horribly disgusting, let me say I have 2 wigs, and I didn't wear one every day, sometimes only a day or two a week. I didn't work at an outside job, and I would wear one of them to my husband's doc appts and my own, a shopping trip, or a rare social occasion. If anyone came to our house, they dealt with my bald head. Most other times, I would wear a hat. So I still have 2 wigs, gently used. I will never give them away or donate them, I am too superstitious; I would think that as soon as I did, I would need them again! Don't want that!
Keep plugging along, you are so close to finished. I think your skin will hold up, they would probably know if it was a problem. Something I have always wanted to know: what are radiation boosts?
Hang in there, Pam, you are doing great!
Mary
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Hi, Adagio,
Welcome home! Glad you had a good time, except for the unfortunate injury of your husband. Good that it wasn't too bad and he found relaxing ways to pass the time without being in the water. I have a friend who recently went to a Mexican resort and fell not once, but twice; on the same leg and at the same spot in the resort! I think she limped throughout the rest of the trip, but had a good time anyway. At least it's a great place to recuperate!
Congratulations on the impending birth of your grandchild, how exciting! Did they discover the gender or are they keeping in suspense?
Gina.....I join you in wondering how Gina is doing, she is usually the life of the party, and we miss her when she is not here. We miss you Gina, and hope you are doing okay! I wish I was better on the computer, if I was I would send Gina a lot of cheerful pics, I can send some emoticons
I missed the post about golden flax seeds being better than the other, didn't know that. I will have to check that out. I had a choice last time I got mine, and I chose the other.
Glad you are glad to be home, and good to talk to you,
Happy Valentine's Day to you and your husband!
Talk soon, Mary
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Hola Marias,
Me alegro de ver tu mensaje, y admiro su comprensión del idioma inglés.
Me escribió que, con la ayuda de Google, aunque me hablan un poco de español. Ahora voy a volver a inglés!
I am glad your treatment is going well, and very glad you got distraction by going to Popyan. It sounds very interesting with lovely mountain weather. I like the picture very much, you have a beautiful smile. We are all scared at times, but it seems you are handling things very well. One day at a time, Marias, and then you will be finished with all this.
Vaya con Dios, y abrazos!
Mary
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Hello Hanieh,
I am so glad you are feeling better, did you seek out therapy? I do hope your friend is getting well sorted out and fixed up. She has been through a lot.
I shall have to read about dipherline. I had not heard about it until you joined the thread. Often a drug is given here for purposes it is not originally intended too.
Congratulations on getting snow! My sister wanted a picture of one of our regional churches in a snowy landscape this winter, she has not gotten it, and we are approaching spring! That is a shame, I think. Most everyone else is happy about it. The children with sleds only got to use them once when we had a little sleet/ice mix. Oh well, there is not much I can do about it!
I think your English is wonderful, you have no reason to apologize for it.
Hope you are feeling good, I have started a little exercise regimen, my muscles are not sure what to think. We will see what happens!
Talk to you soon, Hanieh
Love, Mary
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Hello adagio,
I was sorry to read that your husband had had an unfortunate fall on a loose gravel trail and that a doctor had had to be called. I was glad to know that it had not spoiled your holiday.
I do hope all goes well when your daughter gives birth in March.
I would not take much notice about whether there is a difference between brown and golden linseeds (flaxseeds). If in doubt, have a mixture! I take them regularly, ground up as I need them and used as a bed with yoghurt. I would prefer to eat flaxseeds any time rather than swallowing tamoxifen, since it does the same work. I have been appalled this week with all the news that GPs are being reprimanded for not prescribing tamoxifen to healthy women as a cancer preventive. The drug companies will not be happy until everyone is on some kind of medication. Tamoxifen is a horrible drug with nasty side effects, including uterine cancer. I cannot see it as a preventive because not all breast cancers are hormonal and there are all sorts of different breast cancers. Even if I had had hormonal receptors, I would not have taken tamoxifen or any aromatase inhibitors. It looks as though they are trying to use tamoxifen in the same way that they are pushing statins on everyone. I do wonder where it is all going.
I hope you settle down nicely now and take care of yourself.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your post of February 14th. I was interested in what you had to say about WWII. I sincerely hope I shall not see WWIII, but I would not be surprised. The venom and paranoia about Vladimir Putin and Donald Trump is unbelievable. It is like a broken record over here with the BBC and Sky. I tend to get my news from RT and/or two French channels that I can get on the television or I listen to the French news on the radio.
It is unbelievable that the Speaker of the House of Commons has not been sacked. I cannot understand this country. Not only has he shown bias in the House of Commons, but he has been off spouting his mouth off at a university and telling students that he voted to remain in the referendum.
If I were Donald Trump, I would tell the UK to go take a hike and that he is not interested in coming to speak in this antiquated, rat ridden Palace of Westminster to a bunch of morons.
I have periodontal gum disease, but have had it well treated and I do not have any bleeding gums. It seems that gum disease is caused by mainly two natural bacteria in the mouth to which some people have some kind of allergic reaction. It seems to have got worse since chemotherapy, which, as we know, badly affects the mouth. The gum disease can, over time, loosen teeth. I get check ups and periodontal treatment four times a year with my dentist. I have very good strong teeth, but gum problems. The main problem is that gum disease can cause heart problems, because it causes plaque to grow around the heart. This is not the same plaque that you get on your teeth!
That Epsom Salts mixture for the bath sounds really relaxing.
That is all for now.
Love.
Sylvia xxxx
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Hello Marias,
I was glad to know that you feel fine after your FAC chemotherapy treatment. It must be a good feeling to have your brother with you to help you through this difficult journey.
It must have been nice to have a break in Popayan. You will see that your cancer journey is easier with people around you to support you.
I think you are managing well in the way you write English. If you do not understand anything, please let us know and we can try to simplify or put in the Spanish words for you.
Thank you for the links you posted. I shall look at them later. I am always catching up these days, as I have a lot to do. I have books and magazines piling up to read and I keep trying to get to them.
You must be optimistic and hopeful about your treatment. You just need to finish the chemotherapy journey and then see what the result is. Chemotherapy does not necessarily make a tumour disappear completely. The surgery will do this and radiotherapy will mop up any stray cancer cells. Remember to drink lots of water, rest as much as you need, and keep looking forward. Eat as healthily as you can, and have some gentle walks. Avoid stress and stop worrying.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post. I am glad you are feeling a little better.
Are you grinding up the flaxseeds before taking them? You can then mix them with almost anything.
How is work going? How is your daughter and your husband?
Today in the UK there are hints of Spring. It is a lot milder and lots of bulbs are coming into bloom.
Sending you fond thoughts.
Sylvia xxxx
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Sylvia and all,
Pet scan results show breast tumor is smaller even though breast appears fuller.No spread anywhere else in the body! Lymph node under my arm is bigger so they ar going to biopsy on Friday to make sure it isn't another type of cancer. They are adding carboplatin today and next week.I meet wit him surgeon Friday.
Thank you for your encouraging words and prayers
Rhonda
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Hi to Sylvia, Mary, Adagio, Rhonda, Kath, Valstim, Hanieh, ChrisAsh, Maggie, Lamis, Amanda, Pam, 4everStrong, Marias and all the wonderful ladies and gents on this thread.
I hope you are all doing fine and I continue to pray for your wellness and protection.
I apologize for being inactive from this thread lately because I am getting a bit busier again. I have been preparing for a temporary financial/accounting job that my former boss offered and i have to look at the scope and volume of documents that i will be handling. If I can, i will take the job, preferably working from home.
I am also attending to my social security papers so that hopefully i could get a some sickness/disability benefits. I am also trying to get my PWD ID (Person with Disability) so that i could use it to get small discounts from prescribed medicines, specific groceries and business establishments. They might be petty but still a big help with the huge expenses and I will be able to exercise my rights as a citizen entitled to benefits. These are parts of where my years of labor and taxes have gone.
My kid caught colds, cough and lately fever this past three days and this added burden to me and my DH. We have not taken him to his doctor yet as we want him to fight the virus on his own without antibiotics. We give him cold, cough and fever medicines plus occassional ice pack on his head though. My DH and i have to be extra careful not to get infected too or it might jeopardize my chemo schedule.
I love and appreciate all the pictures and experiences shared by the ladies here including the recent ones from Kath, Marias, Rhonda and of course, those from Sylvia whose Power Foods pics are helpful in choosing the daily nutrients most beneficial to TN patients aside from fruits and veggies. I am glad to know that most of the food that Sylvia mentioned is abundant here in our country, except for berries. Love the smiley emoticons too Mary! ❤️😍😁
Just to mention, the other day, I received a package from a dear Filipina friend in Canada with two big packs of organic almonds and a big bottle of omega fish oil. The almonds are for me and the fish oil is for my kid. I stopped taking supplements temporarily until i'm done with chemo. Last month, i received a big bag of Kirkland walnuts from another friend. I am so touched and grateful for the love and concern from my family and friends.
As i might get busier in the days ahead, my internet time might be shorter but whenever i can, I will check on all of you my friends and try to post as often as possible.
It might be a little late but i still want to greet all of you a very Happy Valentine's Day!!! May you all find the kind of love and/or lovers that you dream of. 😃
Love and Hugs,
Gina
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Better late than never!!!
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Hello, Sylvia, do u use sodium bicarbonate for wash your teeth?.
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Hi Mary,
Thank you so much for all the confidence you give me about my English.
I went to a psychiatrist because every now and then I feel some strange pains in my body that scares me and later on turns out to be nothing. I wouldn't have given these pains a second thought if they had all been before my diagnosis. My friend's recurrence made things worse for me so I thought I m not able to solve this problem all by myself. I talked to him and he believed all my emotions and fears are normal yet I have to deal with them and if I m not treated for them , stress can be a great risk factor for me.
He talked to me for sometime and I realised he was really understanding as without my telling him everything, he said how I have dealt with it so far and how others belive I'm carefree and relaxed about my disease without any worries. Im going on with my life, however I'm not happy. He prescribed one pill a day for two months( Lexopram)in addition to exercising and well eating. He was sure my feelings will get back to normal again but I needed treatment. I think I have made the right decision.
Now , I feel more powerful and more hopeful that with the coming of the spring and our new year I will feel far better.
Love
Hanieh
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Hi Sylvia and all
Though a bit late, I want to congratulate Valentine. Best wishes for all. Here in Persia, not only the lovers but also the friends congratulate this day to each other
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Hi Sylvia,
I'm happy to hear that you are having the first signs of spring and the bulbs are coming into bloom.
Here, there is yet no sign of spring in the plants and flowers. I have decided to have some apartment plants in my kitchen to feel better when I m working in the kitchen. Now I have put three small flower pot near the sink and whenever I m doing some washing I can't take my eyes from them.
Sylvia, my husband and daughter are pretty good except that my daughter has sprained her ankle. This is the third time in this year that she is harming herself. One time she broke her finger playing volleyball, after that she had a pulled muscle in the other hand and now her leg. She has to walk with underarm crutches and can't go to school by school car. I have to take her to and from school. She is not a noisy and troublesome child at all and all teachers and the school staff are sorry that all these happen to her. They were all caused by accident and bad luck. Now I should help her with everything and even help her shower. It's really hard as now she is somehow taller than me. She is the tallest in her class.
My husband is busy with work and he is trying to reduce his working hours to have some rest. This is the end of our year and we all need some refreshing. We have spring clean up before the coming of the spring and also some shopping that should be done for my daughter. I rarely do shopping at this busy time of the year for myself.
Love
Hanieh
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Rhonda,
I thought about you yesterday and saw your message, great news on no spread in the body! Wonder why breast appears fuller though lump is smaller??
I said a prayer that your lymph node is easily taken care of, and you can get on your way with the rest of the treatment. It's enough already, right?
We are going to be in the 70s this weekend, you got all of the snow available!
Talk to you soon, love, Mary
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Thank you Mary,
The breast feels fuller, who knows!Maybe fluids because the tumor is melting like the wicked witch in The Wizard of Oz. The one lymph node grew and the other two shrunk. Where do you live?I probably already knew this and forgot! It is cold here today but it's going to be 50 in Sunday. I have to leave at 500 tomorrow for the
APpointment with my breast surgeon-she will determine what's next.Thank you for your prayers.
Rhond
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Hello Rhonda,
I do hope everything goes well today with the biopsy on the lymph node under your arm.
I do hope you will not have any nasty side effects from the addition of carboplatin.
It would be useful if you added the details of your chemotherapy regime in your details at the bottom of your posts. It makes things easier for those viewing.
Fond thoughts.
Sylvia xxxx
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Hello Gina,
I hope all goes well with the possible job.
I also hope that you manage to get some help with all the costs involved in your breast cancer.
I do hope your little boy will soon be better and that you and your husband do not catch his colds and coughs. You, especially, do not need them.
I was glad to know you enjoyed the Power Foods pictures.
I hope you enjoy the organic almonds. I try always to get organic with almonds, as the non-organic ones are quite hard. I hope you enjoy your walnuts as well. I think we all know how important it is to get a mixture of foods and seeds in our diet, along with fruit and veg.
Sending you best wishes that all goes well with your next chemotherapy.
Fond thoughts.
Sylvia xxxx
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Hello Marias,
You asked about bicarbonate of soda. For my teeth I normally use toothpaste and the one I prefer is Sensodyne Rapid Relief for sensitive teeth. Bicarbonate of soda is very good as a mouth wash if you put a teaspoon of it in a glass of warm water. I have used it that way, on and off, for a very long time. I sometimes wet a little of it on my toothbrush and clean my teeth. Bicarbonate of soda is very good to relieve sore gums and to get rid of mouth ulcers. It is useful as a rinse if anyone suffers from the sore mouth that you can get with chemotherapy treatment.
I am interested to know how much English you were taught at school, if any, and how you started to learn English for yourself. I looked up the link of the books in Spanish, etc., and saw that they are all mainly very famous English classics. Are you listening to them in English?
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
It was nice to hear from you.
I do hope it will not take too long for your daughter to recover from her sprained ankle. Children are all prone to accidents because they are so active. Your daughter will soon spring back to her normal self. I can understand that it is additional work for you helping her while she recovers. Just try to laugh together about it all, as laughter is the best medicine.
Are you getting ready to celebrate your New Year? When exactly does it begin? According to my 2017 diary, in 2017 your New Year is 1439, but it does not give the month. I can understand that you and your husband feel in need of a break. I think here in the UK people are feeling that way as well. I have found it a long autumn and winter and I have hated the long dark winter nights. Spring arrives here officially on March 21st (the Spring Equinox). There are now daffodils in the grounds here where I live and I can see shoots on some of the shrubs. I am looking forward to being more motivated to go for walks, and I need to find the time. It is half term for schools, colleges and universities here, so there are lots of young people around.
Keep well and stop worrying.
Love.
Sylvia xxxx
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Hello again, Hanieh,
Thank you for posting the picture of the plants in your kitchen. I am sure you will enjoy watching them grow.
Love.
Sylvia xxxx
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Hello everyone,
Another week is nearly over and I am posting this lunchtime Friday February 17th.
I do hope Gina and Rhonda will soon have finished their chemotherapy journey and that Kath, Pam and Chris will continue to do well with their radiotherapy.
Lamis – I hope your mum is coping with Taxotere.
Maggie – have you had any news about further treatment?
Val and 4everStrong – thank you for keeping in touch to support others, even though you have finished treatment.
Marias – I hope you are all settled in with your family there to help you through your journey. Where are you exactly now with FAC chemotherapy? I know you had the third one on February 6th. How many more do you have to do? When do you start your taxane treatment? Can you remind us whether it will be Taxol or Taxotere.
Best wishes to Mary, Hanieh, adagio. Many thanks for all you do on the thread and greetings to Amanda, InspiredbyDolce and Jackpot (Gill). I hope all is well with you.
I hope that I have not forgotten any one – Michael, Tom, PeterandLiz, you are in my thoughts.
Best wishes.
Sylvia xxxx
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Hello Sylvia, I am listening Emma, is a beautiful book in the loyalbook page. In the school I learn a little english, but I tray to learn more but my self.
Since agost of last year, is more hard to me read, because I get a headache, so I like to listening more, I do the same with my lecture from the university, I put them in PDF, and select to earing.
I am listening the and I understand a lot. he he he
I still in the FAC protocol, I just past the third, the 4th is going to be in 27 of february. Before that I have to do 12 of taxol.
Some times I write in spanish and put my words in google traductor to become english. and sometimes I write from my self.
I hope u be really good with your gums, I use the Baking soda the way you say.
Have a nice time°°
Marias
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