Calling all triple negative breast cancer patients in the UK
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Hello All
Rhonda, I'm holding your hand virtually for your biopsy
Gina, thanks for your pictures they always brighten my day
Kathseward hope things are moving along with your treatment, Hanieh, Marias, 4everstrong, Lamas, Maggie and others, sending a gentle hug of support your way.
As always Sylvia and Mary thanks for keeping up with us.
I'm getting stronger each day.
Val
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Hi all and Sylvia,
I am posting after long time though I am a silent reader. I have now completed radiotherapy therapy around 3 months ago. My MO started me on tamoxifen as I am ER +3. But treating me like triple negative. I had on and off headache since this medicine was started. We eventually decided to stop to see how this affects my headache. I also had 1 ct scan and 2 mri and last one was only 40 days old. My MO is not concerned about headache, says medicine takes time to come out of the system. But I am still very concerned. Has anybody experienced like this?
Any advice will be much appreciated
Nili
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Hello Everyone,
I just wanted to check in and let you know that I finished rads today. I was so touched to read all of your feedback and good wishes about the end of my treatment for now. I don't have much time, as usual, so I hope I don't forget anyone.
Marias, I love your picture!
Kath, I also love your picture of the sunrise. I hope you're feeling as well as possible these days
Adagio, My RO took his time and explained all of the reasons that he thinks I am low risk for Lymphedema. Also, that their PT's focus on management, rather than prevention of it, and that dosages have possibly become more precise in recent years, and that perhaps there is more info and fear out there than actual lymphedema these days. Regardless, I will still look into the self massage, which is easily available online.
Mary, I laughed out loud about your comments about wig washing, and visitors "dealing" with your bald head. I'm sure your wigs didn't need washing. I wear mine at least 5 days a week for 10 hours a day, so that's entirely different. What's interesting is that the texture and manageability improve with washing, even with cheap wigs. At any rate, I hope to be finished with them soon.
I don't have a deep understanding about boosts, but was advised that for many reasons, I would not be doing them. The short version is that rads for me were somewhat elective in the first place, and that boosts, (targeted treatment to the surgical incisions only, rather than "whole chest") would be a bit of overkill that might negatively impact reconstruction. That was OK with me.
Sylvia, I'm so glad that you posted the detail about the flaxseed. This dietary information is so helpful, and it's a healthy way to move forward, post-treatment. My RO talked a lot about the info, fears, and avoidance behaviors surrounding lymphedema. He was very happy to discuss it. Doctors never seem to agree, but it sounds like the studies and anecdotal evidence have not quite caught up with the advances in treatment protocol. Of course, I have not had a chance to look into it yet, so I'm taking precautions either way.
I'm a little apprehensive about the skin damage that will continue, because now my underarm skin has split. It's pretty uncomfortable, though they gave me Silverdene (sp?) burn cream for it. I have been massively hungry and sleepy, but maybe I'll be one of the lucky ones, with relatively minor side effects.
I appreciate you all, and hope your day is going well.
Pam
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hi everyone
One week to go. Doing oknbut very tired. Still experiencing peripheral neuropathy and also a pulsating feeling intermitantly in my shoulders down my leg and in my cheeks and lips. No pain just feels like something crawling under my skin. Hopefully it's just the last of tyectaxol in my nerve endings but it's very scary. Still have great range of movement and can exercise well.
Had a major hiccup on my way back to Adelaide on Monday. Was driving back to Adelaide and was on the expressway into Adelaide stop at a traffic light and a land cruiser with a steel too bar ploughed into the back of me and then another car hit him and he hit me again! He was travelling at about 90 km so it really shook me up. Car is a right off and I have broken my thumb. I was extremely lucky they thats all I got! I have put pics of my car and the car that hit me below!
Cheers
Kath
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Kath,
My Lord, that must have been terrible for you. All these stress from treatments you're already going thru and then this scary car accident and a broken thumb. That's a bit too much. I hope you did not sustain any other injury or trauma from it.
The only thing I can think of right now is that there must still be God's plan for you. Be thankful for that.
These things must be telling us something. There must be or there should be a silver lining behind the cloud. I am just happy you're Ok.
Praying for you and all of our other TN sisters.
Take care,
Gina
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thank you Gina I appreciate it! You are a sweetheart. Just a little pic to make u laugh! As the impact of the first car hit my wig flew off and landed in my lap! The poor boy that hit me must have thought he had decapitated me! I felt really sorry for him!
Hope all is well with u
Cheers
Kath
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Kath,
Gosh, i was shocked at your first post and then just now i am rolling on the floor laughing thinking about how you may have looked like and that boy's face! Lol!
That's the problem with wigs that's why I dont use mine often. I prefer a headband and a hat. I almost got into an embarrassing situation about two weeks ago when my kid pulled my wig while we were shopping in a mall! My heart stopped for a sec as i tried to hold on to my wig on reflex while an astonished saleslady looked at us.
These things we have to endure. Yeah, sometimes funny too. I feel like Curly the Stooge. Lol!
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Hello, Gina,
It's so good to see you back; as I said, you are the life of the party! Thanks for the Valentine, loved it.
I hope the job works out for you, it would be great to work from home. I think it is good to have a job, something we are good at, and valued for doing. I say all that because that's how I have been feeling lately, like I need more of a purpose in my life. I am not sure what I am looking for, but maybe the search is my purpose right now! I think it's a good sign for both of us, you are feeling well enough to take on some work, and I am wanting to move on past my health issues, though I am far from perfect on that score.
I am sorry your kiddo is sick......I heard just last week that a young child will get 10-12 colds and viruses a year, on average. It seems to be the normal way of things. Sorry I have no more details, I have the radio on when I am in the car, and when I am at home; I hear all these snippets of information, often with nothing to go with it! I know it's always so worrisome for parents when their little one is ill. And yes, do be careful not to get sick too!
I understand your internet time might be shorter as you get busier, come back when you can. Stay well, and hugs to your family!
Talk to you soon, love, Mary
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Hi, Hanieh,
Love your little bit of greenery on the table, we seem to need the growing things around us to help us find calm.
I'm so glad talking to the doctor helped you, sometimes it's really good to have someone who is not family or a friend to talk to, someone who can look at you objectively, and with knowledge. I think it's good he put you on a temporary pill, with confidence you will move away from it in a couple of months. Yes, he's certainly right that too much is bad for you, and bad for all of us; it's certainly worthwhile to try to find ways to deal with it. I was feeling very stressed a few days ago, and stopped and talked to our parish priest for an hour or so. It was a very good talk, and I came away not only feeling much better, but he gave me 3 exercises to do to help. I will talk about them a little later, they are simple but I think will be a big help.
Here spring is coming much too soon, apparently. Today is much too warm for February, and very dry. There are brush fires happening often.
Talk again soon, Hanieh
Love, Mary
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Kath
Oh my. It looks so terrible. Then you made me scream with laughter picturing the scene with your wig. I know you will be sore, but as you say it could have been so much work.
sending gentle hugs to you
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HI, Sylvia,
I am feeling as you do about most of the media; I was reading an article in the Daily Mail UK the other day, it was recapping a press appearance the President made here the other day. But, it was not really recapping it, only slanting it so as to put him in the worst light possible. The pictures with the article were the most unflattering possible. I gave up on the article quickly, since I had actually listened to a lot of the press event, I knew what had really happened and what had been said. It's easy to see why many people are angry with him, because they listen to and read this rot, which goes on and on ad-infinitum, and have no idea what's really going on.
I no longer watch any of the so-called comedy shows on TV that used to be good for an occasional laugh. Now all they do is make jokes about Trump, dress up as Trump, mock him and pick apart every word he utters. Nothing else. It is too boring for words, I can't believe people are still watching this stuff. I like impersonations and a little of it would be funny but it's really creepy for them to hang their entire shows on nothing else. It's kind of like stalking, on a grand scale.
I think a large part of the media is doing the populace a great injustice, by not attempting to inform them of what is really going on in the world. Including the world beyond Trump!
Yes, as far as the gum disease, I think once we have it we have it for life, we just have to manage it. I have my teeth and gums cleaned and checked 3 times a year. Yes, gum disease can cause problems elsewhere in the body; here before people have knee or hip replacement surgery, they have to have a good dental check-up first.
I will close for now, have a very good weekend, Sylvia
Love, Mary
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Hi Sylvia/all
Hope you are all well.
Kath I am sorry about your accident hope you are healing now. The bit about your wig flying off though ... I did have to smile. I used to put a headband on mine as I was always worried about it coming off as I'm so accident prone .
Hanieh I'm pleased that you are getting help from your doctor . I think we have all been through such mental and physical trauma that the body needs both time and help to heal. I go to a support group once a month which really helps me. We have all become great friends , each month we have different people come to do presentations. The last one was on relaxation and meditation the one before was on natural skin care and make up products. It also helps me to be part of this thread .
I went for my review with the oncologist last week. I mentioned the discomfort in my back and hip she didn't seem to be too worried but sent me for an X-ray just to be on the safe side. I have had no results back yet but hope that if there was a problem I would have heard pretty quickly. I have also had my appointment for mammogram which is the end of this month. Feeling a little anxious but I think this is only normal.
After my diagnosis I decided to live life to the very fullest. I don't particularly enjoy my job but it enables me to do a bit of traveling. It is my big 50 year this year
and to celebrate I have just booked 2 hols one to Singapore with a stop of in Dubai in May and to Jamaica in July. I am really looking forward to these trips . I just wondered has anyone got any trips or celebrations planned for this year? Anyway wishing everyone a great weekend ,
Love
Amanda
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Oh the wig falling off made me laugh out loud-too funny
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Kath - that must have been so terrifying for you! So glad that it was not worse than you described - still a big shock to the system, nonetheless. I had an accident one day driving back from my radiation treatment - no injuries, and certainly my car was not a write off like yours. But I still recall how shaken up I was for a few days afterwards - so I can suspect you will be too after this. Hoping that you will recover and ready to go back on Monday morning for the final set of treatments - yeah!! I laughed out loud when you told about the wig - that will be a great conversation piece in the days ahead!! Is that a subaru insignia on your car? Look after yourself and take it easy - you are almost there!!
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Gina - good luck on getting the job and the disability benefits - we need all the help we can get - don't we? Have you now completed your chemo? How are you feeling these days. Thanks for your ability to make us all smile and reminding us of the need to be grateful. Have a great weekend.
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Hi Kath, I am very sorry about your accident, and that you have injured a little in it. I imagine the shock of the impact and how vulnerable you could have felt, especially coming from your treatment. As well as regret the loss of the car.
I want you to get better soon, and may God bless your every moment and free you from all evil.
Hugs
Marias
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That car really hit hard and had a lot of damage.Your car must be safe-thank God!I have been hit from behind and it is scary. Hope you aren't in too much pain.
Rhonda
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Hello Pam, look at the prevention of lymphedema, I found the famous nordic walk, I'll put the link here.
https://www.researchgate.net/publication/286973133...
https://www.researchgate.net/publication/286973133...
I congratulate you for the end of your radicions, and I hope your skin improves very soon. Here people I know use "lubriderm" cream with blue cap.
Https://www.google.com.co/search?q=lubriderm+blue+...:
And you can also make with flaxseed, a slime, which you get by boiling a spoonful of flaxseed in half a glass of water, that slime you smear it in the parts where you need it, it is a great moisturizer.
Tell me if your husband has photos of old Cartagena, I'm behind some of them. If so, ask her if she wants to share them with me.
Muchos abrazos
Marias
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Hello Amanda and all of you.
I'm surprised that all of you wear wigs ... I can not stand the handkerchiefs, they lent me a wig but it really warms me up, and they also gave me a very cute hat and at the very least I realize that I've taken it away ... people Looks at me surprised and remember, ah I'm bald.
Sometimes I am embarrassed that some acquaintance of my work sees me bald but I am getting used to it.
I'm going to be without going to work until I finish the fourth chemotherapy FAC, then with the Taxol 12 I'm going back to work since I'm very scared to lose it.
I hope that the evaluation done after the fourth FAC, with the breast ultrasound, shows that the tumor has decreased a lot.
Amanda seems charming to me about your travels, I would like to make them too, for now I am going to cities near Cali, where I have fun and forget about the disease.
Anyway I can not get away much or many days because the catheter picc, has to be cured every 15 days.
The doctor sent me the "My risk" test to look at the cancer genes he may have.
https://myriad.com/patients-families/your-question...
Any of you have done it?
Enjoy your vacation !! And the exotic sites you are going to visit.
Recibe a hug
Marias
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Hello Mary.
Reading your note on World War II, it is true, history is told by the victors and they are the owners of the media.
In colombia, despite having been in continuous war for more than 40 or 50 years, there is no historical memory about this, about the victims, about the victimizers, because it is hardly visible. Many of the perpetrators are landowners, businesses and the media, who do not want to make war visible, and they want to blame the guerrillas for everything, forgetting class violence and paramilitary violence.
Very recently, through the visibility of the victims, a law was passed "the law of victims". This law seeks to restore the peasants, their lands and territories, and the Colombian state to pay money for their dead and a space of truth, justice and reparation. But when people demand those rights they are branded as leftists, or they are disappeared again, and this is not reported in the media. Many people have disappeared from a movement called the "Patriotic March" but there is no echo either in society or in the media.
Among them a student of the university where I work, that studied two races to the time medicine and engineering ..
When I was in Germany, I visited Hamburg and Berlin, both of which preserved some of the ruins of the Second World War. When I ask why they have not demolished, they told me to keep in mind, where it takes us not to want to see well what happens around us.
But learning to have criteria, judging from oneself implies educating oneself, informing oneself properly and not being carried away by others or by the means.
Assuming the age, of which Kant spoke, is very difficult when we allow ourselves to be influenced by what is around us.
About Trump, I do not believe in the media and I'm sorry that your television shows have stopped being fun and become a karma, but when I listen to their speeches their exclusionary positions, I worry. When I see him speak impulsively and without measuring his words I worry. It seems to me less democratic and more authoritarian.
The idea of finding messiahs that save us is very frightening to me because it removes power from the "sovereign" people and is given to an individual leader who does not represent what the majority wants ... and who decides what the Majority wants ... who influences the majority .. is like when Socrates had to commit suicide, because most decided ... democracy is not a good system, but so far we have not invented a better one.
For example CNN in Spanish when speaking of Venezuela, always in the subtitulos crisis Venezuelan, and always show a flag of Venezuela with blood .. is a way to influence throughout Latin America and say that country is in civil war but When one approaches a little is not true ... in Colombia we have more dead than there for example ... they have advanced thousands of programs for the poor but that does not come out in the media ... with what comes out in the media Is intended to foment an invasion of the USA to Venezuela, as it happened in the countries of the Middle East. It takes the population of the world to support invasions and territories to decide for them.
If you are right the media show what they want .. the owners of the media .. and not the real news.
You realize, that the news is not what happens, it is always someone interpreting it, as if one just could not do it.
Too complex.
Hugs
Marias
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Hi, Hanieh.
I hope you are better and that you can sleep more and more deeply, that happens to me all the time, I need a quiet space, cold, and feel supported to sleep ... I'm taking sometimes. A pill that is called zolpiclona, since November I have taken 10 pills.
A few years before the cancer, I was sent zolpidem but one day, I took the car and went to the city and I did it totally unconscious .. so I leave ...
It is good to meditate, take cidron water, chamomile, do stretches before bed, sometimes it works for me, and others do not ...
But it is a search for the greatest well-being among so many doubts and concerns about ourselves and about what we want.
When I was waiting for the triple negative diagnosis, as I was getting headache, I started to listen to some history programs of a Colombian historian named Diana Uribe.
Listen to several, but one about the Middle East. And how their lands had been divided when the Ottoman Empire between the English and the French were finished according to the interests of the oil companies that wanted the oil of these lands. I found it very sad ... and I understood your struggles a lot and how you have been influenced and manipulated by the West, preventing your own idiosyncrasy of people, religion from advancing and transforming into what you want.
And, in spite of everything, you have generated a country with discretion and a bit of independence from the West.
I really liked your plants on the microwave oven and I hope your son this much better of his allergy.
Receives a strong hug from Colombia.
Marias
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sure is a Subaru liberty! Think that it was the onl thing that stopped me being more injured! Wry good car (it was)
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Hi Gina,
How have you been, I sent you the link of the "Nordic Walking" to treat lymphedema.
Https://www.researchgate.net/publication/286973133...
You can extend me a little more because they send you the Tamoxifen and what are the damages caused.
Hugs,
Marias
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hi Amanda
Dubai is really interesting but very hot! The food is amazing and it is very affluent. Abbu Dabbi is about 150 km away and is amazing so try and visit there. Singapore is a great place but very expensive. The duty free is probably the best tho very reasonable. Eat and drink quite pricy. We also went down to the malacca straits which was great. Full of history and has a real Dutch influence
You will really enjoy both places
Cheers
Kath
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Hi Sylvia, how are you, I was reading your letters and I saw that your tumor was 6 centimeters and that you had chemo and then mastectomy. Tell me, you did the FAC 4 sessions and then 12 Taxol.
How did they realize that the tumor had subsided?
You can explain this to me better to understand it.
I am in chemotherapy coadyudante to diminish the tumor, and I am going to make the 4 of FAC. The doctor will have an ultrasound to see if the tumor is diminished. If it is not, I still do not know what's going to happen. If I decline the 12 Taxol chemotherapies.
They sent me the "My risk" test to see if I have cancer genes.
Https://myriad.com/patients-families/your-question...
Did you take this test too?Here for being tropic I imagine, the doctors tell me that everything I should eat cooked, raw vegetables can be very dangerous and give me an infection in the stomach so everything must pass through the stove.
I have stopped drinking milk and its derivatives and I have greatly diminished the sugar. After I stop taking milk and eat its derivatives I have noticed that I have less flu, less allergies, less asthma and less pneumonia. I drink a lot of guava juice and soursop. I eat a lots of papaya, banana, pear and apple.Say that the body is more grateful when you eat the fruit directly because they produce enzymes that are good for our health.Enzymes that only occur when you bite the fruit, I understand that it is better to eat it directly and not to prick it before eating it.I believe the same as you that flour and sugar are the ones that make one fatten and reach obesity.
The mafia with the psychiatric drugs is scary, that one can be exposed to their intentions unintentionally, I went through with Zolpidem, I took it for 4 years, and one day I left the house in the car and came to The city without being aware of it.
I have been able to cause harm to myself or others.
I really like that you have enjoyed the video about the life of nature in Colombia and that you have understood enough Spanish, it serves to remind you of your old Spanish classes, that well.
For more than 5 years between 2003 and 2008 I took lots of flaxseed, I also used the baba that is obtained when boiled with little water, for the skin and for the hair. I kept the frizzy, moist and pretty. I'm going to use it again.Here at home I have quinoa, chia, amaranth, flaxseed, so I will start again to take each of them, almonds and almonds from Brazil, they are very expensive so little I buy it.I study psychology here at Valley College and work in it as a psychologist for students, teachers, employees and their families.I have made a page for the support of the students that is called emotional support
Http://apoyoemocional.univalle.edu.co
I did a postgraduate that is called specialization in processes of social intervention, in the faculty of sociology, that made us able to evaluate the social intervention processes that are carried out here in Colombia in a critical way, looking at how the actors who do The intervention, usually as saviors, and how the subjects of the intervention are located, usually as objects and minors.
Last year I did a semester of a master's degree in "public politics". I was the best student, recognized and everything, for the first time in my life, but I had to interrupt because I started an immense and constant headache that resulted in my diagnosis of Cancer.
I have learned English from school, although I have never done a course so I am learning every day, with the audiobooks and with some readings like these from this forum.
I use the google traslator a lot because there are many words that I do not know how to spell it.
Receive a strong hug and trust everything to go well with your gums and your life.
Maria.
Pd: today I have felt very good !!!
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Hello Marias,
Thank you for your post of February 17th in which you said that you were listening to the novel by Jane Austen, Emma. It is a book that I read many, many years ago, but Jane Austen is one of the Classic writers of English Literature. Her most famous novel is probably Pride and Prejudice. I think you would enjoy this. It is funny but profound. I would think you must have quite a knowledge of the English language if you are able to listen and understand a book such as Emma.
Probably the most useful thing for you to do, with a view to writing on the thread, is to listen to some conversational tapes where people are talking together in every day language.
I was sorry to read that you are listening to English rather than reading English, because you are suffering from headaches that started last August. Have you had these headaches checked?
What lectures are you getting from the university? Are they connected with your work or are they to do with English language or literature?
Thank you for the audio link entitled the Life Changing Magic of Tidying up. I shall look at it soon and am sure that I shall enjoy it, as I am a minimalist and like everything neat and tidy. People put themselves through torment over too many possessions and too much junk.
Good luck on February 27th when you have the fourth FAC. I hope everything will be fine.
I was interested to know that you sometimes write in Spanish and put your words into Google translator to put it into English. I wonder how accurate the translation is? I was interested to know that at other times you write the English yourself. That is a good way to learn.
Sending best wishes.
Sylvia xxxx
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Hello Nili,
Thank you for your post. I do remember your name from some time ago and am glad to know that you are still viewing.
It would be useful if you could put your details in your profile so that we can all see clearly what your treatment has been, such as surgery and chemotherapy. Congratulations on finishing your radiotherapy three months ago. How are you feeling post-treatment? You will now be having regular check ups.
I was surprised to read that your MO had put you on tamoxifen when you are triple negative breast cancer. I am not a doctor but my own consultants said that these low figures are negligible. I was 5% PR (Progesterone).
You will find something in common with gmmiph (Gina). She is TNBC but 5% ER (oestrogen) and her oncologist wants to put her on tamoxifen and/or aromatase inhibitors. These are nasty drugs with nasty side effects.
From what you have said, your scans, the two MRIs and the one CT scan, are clear.
If that were me I would monitor the situation to see if the headaches disappear completely and if it were me I would not want tamoxifen or the like. I would definitely be getting second opinions. Ultimately it is you who must make the decisions about your treatment. It is your body.
Would you like to tell us more about yourself and where you are. It makes you a real person to us. How old are you?
Best wishes.
Sylvia xxxx
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Hello Pam,
Congratulations on finishing your radiotherapy treatment. Give yourself time to heal now.
I was glad to know you found the information about flaxseed useful. At least we can all try to help ourselves with what we eat and drink. With treatment over you need to get back to eating more than you feel like doing when going through treatment. I try to base my own nutrition through eating mainly non-animal products. I eat fruit and vegetables and try to keep them in balance with more vegetables than fruit. When I is possible I try organics. I eat raw nuts and seeds, often grinding the seeds up and eating them with soy yoghurt (plain, no sugar, live culture). I eat pulses and beans and recently have been buying fresh edame shelled soy beans at my local supermarket. I eat wild Pacific frozen salmon. I try to have some healthy grains. I drink green tea and eat bitter apricot kernels and have been doing so since the summer of 2005. I also have miso paste which I dissolve in water and drink as a soup. I add sauerkraut to my main meals. These are supposed to be good for a healthy gut. I hope this gives you some ideas.
Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I was so sorry to read about what happened to you on your way to Adelaide. I am so glad that you are OK,apart from a broken thumb. How did you get to Adelaide for your treatment?
The treatment will soon be over and you can get back to a normal life. I do hope your medical team will give you a good check up post treatment. I think it is a good idea to have a complete check up once treatment is over to see how your body has been affected. I hope you will get all this and finish with NED – no evidence of disease.
Here in the UK I had a CT scan and bone nuclide scan post treatment to make sure all was clear. If it were me, I would also have a DEXA scan (bone density scan) to see if your bones have been affected and whether you have developed osteopenia or osteoporosis of the bones. You should also have and ECG to see if the heart has been affected. I had this before and after treatment and all was clear. My treatment did cause me osteoporosis.
Take care.
Fond thoughts.
Sylvia xxxx
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