Calling all triple negative breast cancer patients in the UK
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Hello Sarah,
Thank you for your kind words. I do hope all is going well with you and your mum.
Love.
Sylvia xxxx
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Hello Mary,
I was sorry to read that you are not feeling very well at all and I do hope that you will soon be feeling better.
It is a dilemma what to think about the immune system and whether it is permanently weakened, damaged or compromised because of a diagnosis of cancer and the awful treatment.
Like you, I do not know what to think about immunotherapy. In the latest email from Cancer Active Chris Woollams does not think much of it. As far as my friend was concerned, I could not see that it was any different to chemotherapy. It took a terrible toll on her. People get enthusiastic about it because there is talk of boosting the immune system, but how is this done? Are blood tests taken, immune cells removed, manipulated and put back into the body? How can this be done? I wish it could all be explained in common sense terms and perhaps someone could come on the thread, tell us they are having this done and how it is being done. I remember all the talk about monoclonal antibodies for breast cancer treatment. What has happened about all that? Another friend and neighbour with triple positive breast cancer that spread to other parts of the body, had all kinds of monoclonal antibody drugs, became more and more ill, had fluid on the lungs and died. None of this gives me much confidence.
I get fed up with hearing about the next medical drug that is going to work wonders. I really think it is best to leave the body alone.
You will be interested in the following link to an article in The Guardian, entitled Spread of breast cancer linked to compound in asparagus and other foods – using drugs or diet to reduce levels of asparagine may benefit patients, say researchers.
The article was by Ian Sample, Science Editor, Wednesday February 7th.
Again the research is all about experiments on mice. They found that when asparagine was reduced in animals with breast cancer, they found that the number of secondary tumours in other tissues fell dramatically.
It is pointed out that asparagine is an amino acid that is made naturally in the body as a building block for proteins, but it is also found in the diet, and in high levels in certain meats, dairy and vegetable products. Somewhere else it was mentioning specifically poultry and seafood.
Naturally, of course, they have got the answer! It is a drug! Because asparagine is so ubiquitous in food, drugs that target the amino acid may be more effective. The drug is L-asparagine which breaks down the amino acid in the blood stream, so more targetted drugs could block its production altogether.
You could also put breast cancer patients on low asparagine diets while they have conventional treatments.
I think that with asparagine being naturally produced by the body, and present in so many foods, anything like this is likely to cause deficiencies. A certain professor mentioned is promoting drugs rather than diet.
There is a more detailed list of foods containing asparagine. They are beef, poultry, eggs, fish, and seafood, not to mention asparagus, potatoes, nuts, legumes and soy!!! How about a nice hot soup of nothing?! A mouse may survive on it, but humans?
These mice do not live in the same environment as humans. Where is their vitamin D? What else are they deficient in?
Is this taking us down the same route as statins?
I do hope you will have been able to have a read of the latest Chris Woollams email. I thought there was a lot of interesting topics in it.
Sometimes I feel as though I am going round in circles trying to get through everything. I have not been able to get back to my Dental Diet book this week, nor read What Doctors Don't Tell You in more detail and I have some articles in the i paper from Wednesday to read.
That is about all for now. I do wonder about that fellow George Soros and the way he is interfering in Brexit. Why does he not mind his own business? We had a democratic referendum and the powers that be are destroying it. It is unbelievable. The people are sovereign and I do wonder what will happen if we do not get the Brexit we voted for. We need to control our borders and we need to be a sovereign country. I for one want to be a citizen of this country and not a 'subject'. It is so insulting. Nigel Farage did a good phone in last night on LBC about George Soros.
I am going to have my second incision on February 23rd. I am not looking forward to it because of the lymphoedema in my arm, but I am determined to discharge myself on that day.
That is about all, Mary, but I would love to know about those changes to bc.org.
Take care.
Love.
Sylvia xxxx
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Hi everyone ! Sending our love to you from mummas second EC infusion ! Mum says thank you for all the support, information and help you provide us with !
She had a lot of shedding today her onco wasn’t keen on her continuing cold capping but she said she would like to give it a go anyway as another onco told her to continue as she still has hair still. They lowered her EC dosage by 30 percent !
Sending you all big hugs
Xx
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sylvia, a nurse friend told me today that I can request to be followed by the medical oncologist but that it will probably be done through my G.P. Thanks for your advice and encouragement.
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Hi everyone
Hope u are are well! Been try to catch up with all of the posts. Have U got ur surgery date as yet Sylvia? Couldn’t see it on the posts. The worst part is waiting isn’t it? Adagio I get really strange sensations like ants crawling under my skin. Is ur itching similar to that?
My tooth has settled. Still get slight pressure in my forehead on one side at times which I think may be when I’m a bit dry. Hoping that is it anyway. Start to get a bit nervous a out my onco app in March. Feel really well but my globulin in my bloods had been slightly higher than normal the last couple of times. My onco isn’t worried and everything else is normal and say it can be elevated in arthritis which I have but I made the mistake of googling yet again. Immediately my mind goes to liver which is really scary. Wish I didn’t look ha ha. Other than that I feel good. Still gave peripheral neuropathy but I gave been doing Pilates which is helping heaps.
Had my hair cut in a new style last week which made me feel heaps better. Still get used to it ha ha. Have a good weekend everyone
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Hi Sylvia
I am glad to see you have a date for the 2nd incision on your arm, surely you will go back to be checked at least once before you discharge yourself? Or I suppose you can use a self-observance system, you would know if anything is going on that shouldn't be. I hope that all goes very well with that and you can put it behind you.
I have been feeling so poorly that I went to my GP yesterday, he has a clinic where he appears in the afternoon on weekdays about 3 miles from my house. I told him my symptoms and he did a nose swab, and I have been diagnosed with Influenza B. So much for the flu shot. Of course, he is a Doc so he said I should have probably had a second flu shot later in the season. They have an answer for everything! He gave me a script for Tamiflu, since my symptoms only started Wednesday, and an injection he does containing B-12 and a little steroid. It does give one a little energy, which is good, and I don't think the B-12 does any harm. He said to watch out for any wheezing or shortness of breath, which can mean one is getting pneumonia, I am careful that I get up frequently when lying down during the day, to keep fluid from building up in lungs.
I did read the link you posted about cutting out asparagus, another friend had sent me a message about this yesterday, I suppose because I have a big asparagus bed and eat a lot of it in the spring. I have to control myself here and not head into another rant. What, indeed, are we supposed to eat? I see they have incriminated not only asparagus, but all meats, fish, seafood, beans (pulses), nuts, seeds, soy etc. ad infinitum. It's too much, these studies are done on mice, and they do not say how big a dose of the asparagine is given to the little animals. They do say when they reduce the dose the chances of recurrence lessens. I am going to bet that when, someday, a responsible study is done that there will be found to be mitigating factors that cancel out the bad effects and the poor asparagus will be returned to favor, with its' reputation forever damaged. And of course, the very last paragraph encourages people to continue eating a very varied diet, including fruits, vegetables, legumes and limiting processed meats, high fats, and sugars. What?? Notice the sugar is the very last thing we should limit? There is no information regarding who is paying for this research, I am willing to hazard a guess that it's Big Sugar, I'm sure they are tired of being the bad boy in all this. And yes, I did take note of the fact that one of the "scientists" says they can come up with a drug to combat the evil L-asparaginase so we can eat what we want and just take a pill.
But wait! Last week I read another attention-grabbing headline about Lectins in Food being dangerous because they cause inflammation, and they are obesity-causing. "The Foods to Avoid or Limit" are (drum roll) all legumes, squash, all nightshade plants, (tomatoes, white potatoes, peppers, eggplant). All grains are to be avoided, although if one eats limited amounts of grain white flour is preferred over whole wheat. Corn is the worst villain, including any animal fed corn and any food that contains corn. The list of "What to Eat", is much shorter, and guess what! It includes asparagus! Question: does it sound to you as if the Mediterranean Diet is being attacked?
Like you, I have not got much reading done, I seem to have a short attention span and this flu has made me a bit spacey.
I cannot figure out the motivations of this George Soros, it seems his intent is to overthrow any stable government system in the world, and destroy all the very financial systems that have made him billions. I can only conclude he is an evil person, who, of one checks, is in the background of much of the uproar that you see nowadays.
I had better close, I want to answer a few more posts before I go rest a little. And perhaps have a nice bowl of hot water, your "nothing soup"!
Love, Mary
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Hi, Sarah
Thanks for posting the picture, what a couple of lovely ladies! You two are so alike you could be sisters, it's amazing.
I am so glad she has done better with the second infusion that has been lowered 30%. Some of us just can't tolerate the full dose, it takes a toll on us.
I see she will continue the cold-capping, I wish her good luck with that, it does work for many people. I did not attempt it, for one thing I didn't really know about it. And my Cancer Center didn't offer it, so I would have been on my own with it.
It seems you are taking wonderful care of your mum, hugs to you both!
Love, Mary
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HI, Nancy
I read your post about stopping having check-ups with the oncologist. I also see that you had a tumor that was DCIS, but also one that was Stage 1A, so I am puzzled too as to why they would cut you off from check-ups.
I read Sylvia's answer to your post and I agree with all of it. No Doc(MO, BS, GP) has ever told me I am cured, NED(No evidence of disease) is usually the best we can hope for. Even my acupuncture doctor agrees, he says he believes that once one has had cancer it is always present and just a matter of whether or not it presents itself again. We are told that once we survive to 5 years our chances of recurrence lessen. That being said, the testing we get at these check-up visits is very cursory, and tests are not ordered unless one is having some sort of symptom. At least, that is my experience.
My daughter-in-law had a DCIS E+ tumor, I will ask her what her check-up schedule is, if any.
Anyway, glad you are doing so well! Yes, do come back frequently, we love to hear from you!
Love, Mary
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HI, Kath
In Sylvia's most recent post to me, she said the date for her 2nd incision is Feb. 23.
I told her that I was diagnosed with Influenza B yesterday, it's almost a relief to have a reason for feeling so badly! I have every possible symptom with the exception of high fever. It has even affected my appetite, that rarely happens with me. Food tastes awful, even my homemade chicken soup isn't going over well.
I see you are worried about the elevated globulins in your blood. I know how you feel, we go straight to Google and then worry about everything we see there. I even did a quick check in your honor and saw 2 different statements in 2 different reports. One said low globulin could be a sign of liver disease. The other said high globulins could be a sign of liver disease. I gave up looking! Do you have osteoarthritis or rheumatoid arthritis? I have the osteo and I am rather confused by it all and if it's caused by inflammation or if it causes inflammation. I am glad the Pilates is helping your neuropathy, I am convinced the acupuncture helps mine too.
Kath, I love your haircut, it looks so good on you and so carefree! I'm sure it will perfectly fit your lifestyle as a busy nurse, and in the very hot weather you have been experiencing. I also love the color of your hair!
Talk to you again soon, love,
Mary
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Hi, Val
I have been trying to catch up on posts and noticed one from you that I had missed. I am so glad you seem to be doing well with working towards your new normal, and glad you have missed the flu.
I thought I had made it through, but yesterday I was diagnosed with Influenza B. And I did have a Flu Shot, in late October. I had not had an actual case of Influenza since 2013, and then I had also had a Flu Shot. That year I was pushed hard to get a shot since my husband had lung disease, but he did not catch the flu from me when I got it, which surprised me. So I'm not sure what to think about it all, my knee-jerk reaction is to think it's all pointless getting the vaccines, since our state has been one of the hardest hit in this year's flu epidemic, and flu shots are pushed everywhere we go.
It is interesting that your daughter gives you the shots, but does not take them herself. One would think she would get a lot of exposure to illness in her job, from sick people coming up to pick up drugs. I'm not sure I will have another one, I'm leaning towards no.
So good to hear from you again, love, Mary
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Hello Sarah,
Thank you for the lovely photograph of you and your mother.
I was glad to know that they have lowered the EC dosage. I do hope she feels better on this.
Thinking of you.
Best wishes.
Sylvia xxxx
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Hello Nancy,
I do hope you manage to get some check ups fixed up with your medical oncologist. I think psychologically it will be good for you and give you some reassurance. It will help to bridge the gap between finishing treatment and being left on your own to get on with things.
Never be afraid to push for your own well being and your peace of mind. The experts have got to learn to put themselves in the position of their patients. You have every right to get everything that you feel is right for you. Your body belongs to you and no one else.
Thinking of you.
Love.
Sylvia xxxx
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Maryna8, I think that the way my RO expressed his comment led me to be confused. I would much rather hear the words "no evidence of disease" which is a reminder that there COULD be recurrence, but for some people, to hear the words "you are cancer free" might lead them to believe there will be no recurrence. I was told by a nurse friend yesterday that if my MO signs me back to our local clinic, she will probably continue to keep check on things and order bloodwork, and if that doesn't happen that I am within my rights to request it. I do know that our local clinic does NOT check for tumor markers and that information would be a help to me. My tumor markers in January were down from October. These days, I feel good and am more active, but sooo tired at times. Am not sure if it is fatigue or just overdoing things.
I hope everyone has a good weekend, and will be thinking about you. Hugs.
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Hello Kath,
Thank you for your post and for the photograph. I agree with Mary. I think the new hairstyle suits you very much.
Yes, I am going for the wider incision on Friday February 23rd. I have been told that once it is done I shall get the result and there will be no follow up. That suits me because I am fed up with trying to deal with the dermatology department that deals with moles and the lymphoedema department.
I find the NHS is so disjointed. I had a letter last week about the date of the appointment, it is at 3:30 pm on February 23rd. That was from a nurse. This morning I received a letter from the consultant in charge telling me to get in touch to let her know how my scar was after the first incision, so that an appointment could be made for the next incision! I also need to phone the lymphoedema specialist to tell her about the next incision because of the lymphoedema problem on the same arm. I have cared for the scar and it is nicely healed but I am concerned about another incision here. These two departments are adjacent but they are obviously not connected. Watch this space!
I was glad to know your tooth had settled.
Try not to worry about your appointment with your oncologist in March. They are only trying to help and keep an eye on what is going on.
I do not know much about globulin but you must stay off the internet. If that were me I would have a good medical book for reference. The BMA medical book is good.
It is good to know that you feel well.
Could you explain how Pilates is helping with the peripheral neuropathy?
Take care and stop worrying.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your very detailed and interesting post.
I was sorry to read that you have been feeling so poorly and that you had to go to see your GP. I was very sorry to read that you have been diagnosed with influenza B. I agree with you that these vaccines are a waste of time. They mutate and they do not work.
It seems as though your GPs are a bit like ours. They have always got the prescription pad at the ready and have to prescribe something.
I do hope you feel better soon and that you do have some kind of help from friends. If that were me I would be taking echinacea extract and vitamin C, but that is just me.
I shall continue this post tomorrow as I have had another busy day and am feeling quite tired. I did read all you said about asparagus etc. and it did make me laugh. That is good, because I feel pretty miserable about so many things, so a laugh is a good tonic.
That is about all for today, but I shall continue tomorrow. I feel that the 'experts' are trying to convince people that a healthy diet is not as good as their magical pills. I feel that a healthy diet, especially the Mediterranean diet is all good and being on it is the most important thing that we can do for ourselves to help ourselves. Healthy eating, keeping active, mentally and physically, and avoiding negative stress must certainly help us more than any pills.
I shall write more tomorrow.
Love.
Sylvia xxxx
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Apologies Sylvia must have missed that pose . I’ll go back and catch up. Best of luck for the 23rd. You will do well I’m sure and I’ll be thinking of u
Cheers
Kath
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Apologies Sylvia must have missed that pose . I'll go back and catch up. Best of luck for the 23rd. You will do well I'm sure and I'll be thinking of u.
The Pilates worked with my core and is probably helping with my joints and the way I walk more than the neuropathy. I think that is slowly settling of its own accord but I don’t think I will ever have normal circulation in my toes again. I can cope with that th
Cheers
Kath
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HI, Sylvia
I'm glad you enjoyed the asparagus post, I get quite exasperated by all this nutrition non-wisdom and sometimes making light of it is all we can do!
You mentioned friends helping me out now, that is not going to be happening for a while. All night we had a mixture of freezing rain and sleet falling, and everything is covered with an incredibly slick mess. Nothing is moving outside, not a vehicle has gone past, not even a road truck to spread salt. It would be a very bad time to need an ambulance or any kind of real help, I am on my own. A friend did drop off a few things I asked for at my door yesterday, but he did not get near me. He is somewhat of a germophobe, and I'm sure he will not step through my doorway for a couple of weeks! I don't blame him either.
I have not been sleeping well at all, I wake up coughing and with a running nose after a few hours. I know that's not helping me, but don't know what to do about it. I guess moving the gunk out of my lungs is a good thing.
I thought about you when I looked over yet another learned study, this one finds that drinking very hot tea causes an uptick in esophageal cancer. The study was done in China, I suppose that's why they don't mention any other hot beverage, probably boiling hot water would do the same damage? But only tea is mentioned.
I'll talk to you again soon, from my frozen environs,
Love, Mary
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Hello Mary,
Thank you for your latest post. Like you I get
exasperatedby all these silly attacks on good food. Eating healthily is our greatest weapon in trying to stay in good health and we must stay away from processed and junk food.I was very sorry to read that you are all alone and feeling very poorly. I do hope your weather is improving. I do remember from Canada how awful freezing rain is. I do wonder what is happening with the weather everywhere. This autumn and winter in Exmouth has been one of the coldest, wettest, gloomiest and windiest that I can remember in the sixteen years since Raymond and I moved here. Today it has been cold by Devon standards and the wind has been biting.
I was glad to know that a friend did drop off a few things that you had asked for. I think everybody is scared of picking up the nasty flu bugs that seem to be around.
I do hope you will soon be back to your normal self.
You mentioned about hot tea and oesophageal cancer. I have heard that before. I would think that drinking any liquid that was too hot would not be very pleasant. Whether it would lead to cancer I do not know.
The other day I wanted to find a list of cancer drugs because I was interested to know how many there were and how many were familiar to me from breast cancer treatments that are used. I looked up Cancer Research UK and found a list entitled Cancer drugs A to Z list – Find information about individual cancer drugs, cancer drug combinations and their side effects. The list includes all types of cancer drugs, such as chemotherapy, hormone therapies, targeted cancer drugs and bisphosphonates. The drugs are listed in alphabetical order by pharmacy (generic) name and brand name.
I looked through the list going from A to Z after I had printed it out. It is about four pages.
Going through A I was surprised to come across Asparaginase (Crisantaspase, Erwinase).
I was surprised to find this listed here because I thought from what we read before about asparagus and all those other foods containing asparaginase, was something that was in trial stages on mice.
The link is:
http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs
I clicked on it and found that it was already being used for chemotherapy treatment for acute lymphoblastic leukaemia.
This is a very useful list in that you click on any of the drugs and get a very clear description of it and its use.
That is all for now. I still have not got back to my reading.
I do hope others from our group will pop in to offer comfort and keep you company.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your kind words. I shall let you know how I get on on the 23rd.
Thank you for telling me and all of us how Pilates is helping you.
Take care and keep posting.
Love.
Sylvia xxxx
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Hello Hanieh,
I am missing you on the thread and hoping that things are going well with your treatment.
Are you still doing a bit of teaching?
Hello Marias,
How did your treatment go on February 7th and how is the recovery going?
Hello adagio,
How are you and did you make any decisions about your osteoporosis treatment?
Hello Pam,
I hope we shall get your usual interesting post for tomorrow.
I saw on my diary that February 12th says Lincoln's birthday USA but it does not say that it is a holiday.
Hello Nancy, Kath and Sarah,
Thank you for your contribution to the thread this week.
Hello Lou, Val and Kathy28A,
Wondering how you are and hoping you will continue to post.
Everyone is welcome to post here and we shall try to help you through your journey with TNBC.
Best wishes to all.
Sylvia xxxx
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Hello Kath - just wanted to say your hair cut looks wonderful and frames your face beautifuly !
Hi Mary - thank you for your kind words. Mum decided to continue with CC because she said she didn’t have anything to lose and thought the process wasn’t too bad. So good on her for trying. Her hair is still shedding but still has overall hair it’s just extremely thin and you can see the bald patches. She is going to give it another week and if it’s still falling she will go for a little pixie cut to transition into little or no hair.
I came across this product on amazon that is 100% keratin hair fibre ( to cover any bald patches ).
Would love to know everyone’s thoughts on it. Mums onco said she has no issue with her using it so long it’s natural and makes her happy. Do you think it’s worth a try ?
https://www.amazon.co.uk/gp/aw/d/B00W86C5YS/ref=cm_cr_arp_mb_bdcrb_top?ie=UTF8
Sarah
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dark day today. Still
Panicking about my bloods. Wish I hadn’t asked him about them. Need to start breathing
Cheers
Kat
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Hello Kath
I know it’s easier said than done but try to practice some mindfulness and 10 mins of meditation. I’ve tried to apply it to mum whenever she starts to panic and it seems to help !
We are all here for you
Xx
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Sylvia - osteoporosis medications have been far from my mind the past 2 weeks since I am really struggling with some kind of allergic reaction which is exhibiting itself with hives and bumps and intense itch in my back. Back track 2 weeks when I went to my family doctor who misdiagnosed the rash for a bacterial skin infection and prescribed antibiotics which I did not take immediately because I am quite opposed to them - however, the back did not get any better from applying an antibacterial solution and it was driving me insane - and then I had an outbreak on my lower leg - with bumpiness, redness and intense itch - so I did finally fill the prescription and took the tablets . They did not help at all and then my back started to break out into the hives and more bumps with a big increase in the itch intensity. I thought I would go insane. Well, I quit the antibiotics - went to see a different doctor today - who was much more sympathetic and actually listened to me and looked and felt the bumps. She has given me a referral to the Skin Centre at the Vancouver General Hospital - so I do not know how long I will have to wait although she did say that she put it through as urgent - so I will wait and see when I get the phone call. The doctor today said that I needed to get the inflammation down - so she prescribed cortisone cream to use 3 times a day along with a prescription anti-histamine. I have got the cream, but am holding off on the Atarax (the antihistamine) since I read that it makes one like a zombie). I would not like that feeling at all, so she also said I can use Benadryl so I got the night time stuff and I will give it a try first. The doctor was happy with either one, but definitely said that I need to take it.
So that is my story - I feel like I am falling apart and I have not much faith in the medical system - so I am going to read lots and see what I can come up with myself. Perhaps go on some kind of elimation diet to see if it is something in the food that I am eating that I have become allergic to. I am also going to take Fish Oil which is apparently good for skin conditions. It is all very discouraging albeit not life threatening - I hope. I did get liver function tests done and they are all normal so that is a good thing. It is especially frustrating since I have never ever had any skin issues my whole life.
Sorry I have not been contributing much, but I have been beside myself and very distraught. I think itch is almost as bad as pain - it definitely takes on a life of its own and has taken over my life.
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Hi I had a double mastectomy,having gotten the BRAC1 gene, in 2016. I had breast cancer nearly 20 years ago and had a segmental mastectomy at that point along with chemo and radio. Having been through a lot of operations and scar tissue problems from the double mastectomy absolutely gutted to have been diagnosed with triple negative breast cancer in the remaining breast tissue and has spread to my lymph nodes. I am just about to start 8 x chemo sessions in order to shrink the tumours first. Was really poorly on chemo last time and only managed 3. Devastated and struggling to get through this now. I was delighted to see that people do survive after five years. I am usually such a strong, upbeat person but this appears to have left me at present. I have a great partner and loads of family and friends and feel so lucky to have them but trying to be cheerful and upbeat all the time is really hard.
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Hello adagio,
I was so sorry and shocked to read what has been happening to you and I do hope you will be able to get to the bottom of this quickly.
I do understand how down you must be feeling because there is nothing worse than pain or itching that will not go away. It wears you down.
If that were me I would start being my own detective and start with thinking about when the itching first started. Had you been using a new moisturiser, for example? Had you had any new clothing made of different materials. Had you eaten something different that was not part of your normal diet? Did you just have itchy skin with no kind of red spots, pimples etc.? It could all be due to stress and then you may have scratched it so much that it caused something else. How did the doctor know by just looking, perhaps, that it was a bacterial infection? These are just some of the ideas that are in my head. I am also thinking that perhaps it is something that you picked up in India, has been latent in your body and has just manifested itself. The antibiotics obviously made it worse. Was the antibiotic by any chance Flucloxacillin? I know they give this for skin problems. My cousin was given it for fungal infections on his feet and probably for bacterial problems. It does have a lot of side effects.
I do hope the cortisone cream will help.
Have you thought of using some aloe vera gel? It is excellent for skin problems.
Have you thought of seeing a private dermatologist?
It looks as though we are all having problems this year. Mary seemed very poorly last time she posted. I have all this lymphoedema and mole surgery hanging over me and it has been so slow. We have not heard from Marias or Hanieh and I am concerned about their treatment is going.
I have just looked at the thread and felt so upset for you and then I saw a new poster, Duchess60, and could not believe what she is going through.
Finally, I do know that omega 3 fish oils are supposed to be excellent for skin problems. I would not think they would do you any harm.
Please keep in touch and if I find anymore information I shall let you know.
Love.
Sylvia xxxx
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Hello Duchess60,
Thank you for your post. I am sorry you have to be here but you will get all the support that you need from the nice ladies on this thread.
You said that you had breast cancer nearly twenty years ago and that you had a segmental mastectomy at that point and that you also had chemotherapy and radiotherapy. Can you tell us what kind of breast cancer you had twenty years ago and what chemotherapy treatment you had? I do not know if you are in the UK but if you are you probably got very little information at that time. The most common breast cancer is invasive ductal carcinoma (IDC) and for chemotherapy for some time it has been a combination of something like epirubicin and cyclophosphomide and then a taxane drug, either docetaxel (Taxotere) or paclitaxel (Taxol). If you had hormonal breast cancer you were probably put on tamoxifen.
It must have been quite a shock to discover in 2016 that you had the BRCA1 gene. Was there any particular reason that you were tested for this? It must have been an ordeal to have had to have a double mastectomy and then to have had operations for scar tissue problems.
When were you diagnosed with TNBC and told that it was in the remaining breast tissue and had spread to your lymph nodes? Do you know how many lymph nodes have been affected?
Please do not believe all the doom and gloom that you find on the internet about TNBC. You can deal with this and get through it. I was diagnosed with TNBC in 2005 and am still fine.
Let us know what chemotherapy regime you are going to have. You say you are going to have eight sessions. Are you going to have these every three weeks or every week? Women on the thread find the weekly sessions easier to deal with. You should ask what chemotherapy drugs you are going to have.
I am sure you will feel better once you start the chemotherapy and get into a routine. We shall try to help.
I was glad to know that you have good support, as that will help. When we have a diagnosis we all go into shock but we do get ourselves through the treatment. When you start the chemotherapy make sure you keep well hydrated,get plenty of rest and keep looking forward with optimism.
Thinking of you and sending you our very best wishes.
Love.
Sylvia xxxx
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Hello Duchess60 and to all new people viewing the thread,
I thought you might be interested to read my story, which is on the Community Members Share Their Stories → From Around the World on bc.org.
Best wishes
Sylvia xxxx
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sylviaexmouthuk's Story
"I have a date that will be forever etched in my mind and that is June 20th, 2005. That is the date on which I was diagnosed with breast cancer. I did this after walking around with a lump in my right breast for a long time, that deep down I knew would bring bad news. On June 20th I saw my GP and after examining my breast and under my arm she told me that she thought I had breast cancer. I remember being very silent and I heard her say that under our NHS (National Health Service) system there would be a two week wait and then I would be called to the hospital. I walked out of her room to where my husband was waiting for me and I just told him the news and about the two week wait. I thought this was a long time and so my husband and I went back into the GP's consulting room and asked how I could get it confirmed sooner. She referred me straight away to a breast cancer consultant who worked in the NHS and privately and within two hours I was with that consultant.
"I felt at ease with her from the very beginning and she would be my breast cancer consultant surgeon for the next eight years. Emotionally I was in turmoil but it manifested itself that day in quietness. The consultant examined me and did a fine needle aspiration as she told me she was certain I had breast cancer but she now had to prove it. She made an appointment for me to see her at her breast cancer clinic for the newly diagnosed the next morning, a Tuesday. That night I slept poorly and my mind kept saying I had cancer.
"I was already finding this very difficult as I had never been ill in my life. That Tuesday was probably the worst day in all of my treatment. My emotions were out of control and I was teary, low in spirits and afraid. I remember sitting down at the consultant's clinic and just looking at everyone there. I was called in and was told to go upstairs for a mammogram and ultrasound. My consultant kindly had a young nurse tail me for the day. I tried to talk with her but I was overwhelmed with emotion that day as I had the mammogram, ultrasound and core biopsy. I kept weeping and developed a bad headache. After these procedures it was back to the consultant for a summing up. She told me I had breast cancer and that I would need surgery, chemotherapy and radiotherapy. She further told me to come back and see her the following week when I had had time to digest it all.
"That evening I remember sitting in the bedroom and crying till I could cry no more. In fact I did not cry any more during my eighteen months of treatment.
"Looking back, I made some decisions that were wrong and I would say to anyone facing a diagnosis of breast cancer or discovering a lump not to delay but to get it sorted out straight away. I delayed seeing my GP and then I delayed having my treatment. This is not something that I would do again.
"The next day I was more together and since I am studious and inquisitive, immediately started to read up about breast cancer. I read a book entitled The Cancer Directory by Dr Rosy Daniels and read it from cover to cover so that when I went back to the hospital I had already written to my consultant asking all sorts of questions about stage, grade, receptor status etc. When I saw the consultant she had the paper with her and went through answers with me. She told me that it was most unusual to be asked all these questions in such a scientific way and that patients usually just wanted to go through the treatment not knowing much. I would advise all newly diagnosed patients to get informed about what is happening to them and to be in control all the time. Back in 2005 I was not into computers and did not research the internet and in a way I am glad that I did not, but took my information from a reliable book. I think that at that time breast cancer was still very much in the dark ages in the UK, especially when compared to the US. Even now I find on the forum that American patients are probably told much more than they are in the UK, although I think UK patients now get more information from their medical team and in a way they have to be given this because the patients are much more informed.
"At that time I remember my consultant telling me that the prognosis was not good because my breast cancer was not hormonal and she could not give me something like tamoxifen to help. She told me I was oestrogen and progesterone negative. Nothing about triple negative as such was mentioned. I was told I had invasive ductal carcinoma. It was not until much later when I finally agreed to treatment that I was told that I was HER2 negative and that it was a good thing to be so. None of this meant much to me at the time but it certainly would later. I would tell all newly diagnosed patients to make sure they have this information.
"In the UK we are told we can get second opinions, that we have the right to do it, but I am not sure whether doctors like it. I think the medical profession has had to open up more in the UK because of the internet and forums like this, where patients are getting lots of information and can speak up for themselves to doctors.
"I finally started six months of chemotherapy in November 2005 after I had been through consultations with alternative doctors, a nutritionist and a homoeopathic consultant to whom my breast cancer consultant referred me. Both told me I needed to have orthodox treatment and I now felt ready for it. The homoeopathic consultant kept me as a patient throughout my orthodox treatment and prescribed things as adjuncts to my treatment.
"Once I started the chemotherapy I was fine and was told that I had sailed through it. The worst part was losing my hair but I soon got used to wearing a lovely wig. I know that many women are really frightened of chemotherapy but there is no need to be. Find out what drugs you are going to be given and why, listen to your oncologist and get information and tips from those that have been through it. You can get through chemotherapy. There is life after it.
"Three weeks after chemotherapy finished I was in hospital for five days for a mastectomy of the right breast. Again I would say to all newly diagnosed patients that you can do this and live without a breast.
"I finished treatment with three weeks of radiotherapy with boosters and found time went very quickly with this. It is tiring going to the hospital five days a week for three weeks but once there the treatment is quickly over. Again, I would say listen to your oncologist and radiologist because they know what they are doing.
"When all this treatment comes to an end you can feel cut off because you are no longer busy going to the hospital. You go into the next phase which is living as normally as possible and then going for your regular visits with the oncologist and the breast cancer surgeon. We all get anxious as the visits come due but most of the time we get good news and come out of the hospital feeling exalted.
"Next June 20th it will be ten years since my diagnosis. Since then I have done everything to keep myself healthy and fit, I have lived life normally and I continue to do everything that I did before. I know I cannot take anything for granted but I just take one day at a time. I was given a poor prognosis but I think that was because, unlike the majority of women, I was not diagnosed with hormonal breast cancer. I am glad that I have not had to take any medication to keep the cancer at bay, so I can say that I am positive about having been diagnosed with what is now commonly called triple negative.
"Looking back I can say that I had a dream team for my treatment. I think my breast cancer consultant and oncologist are dedicated women who go that extra mile. I was also glad that I was offered and accepted to have hospiscare nurses come to visit me when I felt the need. They provided invaluable help with any problems I had, whether financial, emotional or medical.
"As for food during chemotherapy I just kept to the plain foods that I had always liked. I think this is very personal and would say that you have to eat whatever will get you through your treatment. I know mashed potatoes with some poached fish helped me a lot, but mainly I kept to my normal diet, which is to avoid meat and dairy products.
"Most of my treatment was during the winter months so the sun was not a problem, but in my everyday life now I am very vigilant about exposing myself to the sun. I have just what I need to keep up my vitamin D and take vitamin supplements.
"I think the UK commitment to the environment could be improved but in my everyday life I try to avoid chemicals as much as I can."I think that the breast cancer charities do a lot of good in this country but I think even more emphasis on cancer prevention is needed. I also think that women need to help themselves as well by following a healthy diet, not smoking, not drinking alcohol (or very little), exercising, keeping to a healthy weight and avoiding chemicals in their everyday life in the home. Very recently I read that reducing calorie intake to keep weight down has been found to help with reducing metastases especially in those with triple negative breast cancer. We have a serious problem with obesity in the UK.
"Most hospitals here have charities offering all kinds of support to cancer patients.
"I discovered Breastcancer.org in 2009 when I had finished treatment. I started reading the various threads and thought we were in the dark ages here in the UK with triple negative breast cancer in particular and decided to start the UK thread. I had no idea that it would still be going after nearly four years and I have felt so enriched by all the women from all over the world that have been on the thread at various times.
"Breastcancer.org is a wonderful forum and providing a marvelous service."
--sylviaexmouthuk, United Kingdom
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Hello Sylvia,
We are certainly all having our problems right now, I think we just need to get through these last gloomy days of winter and get back into the light of spring. Today marks a week since I started feeling bad, I am better but still quite weak and coughing a lot.
I have been noticing some things over the last week. When one is ill, one is very lucky if anyone gives a damn, everyone is so involved in their own life that it can go quite unnoticed unless one makes a fuss. You who have partners in your life, count your blessings, living alone can be very daunting when illness strikes. This is the first illness I have had since my husband died, and even though he was also ill, just having another person to commiserate with makes a big difference. Another thing I noticed was that my usual diet of organic greens, fish, nuts, fruits all went out the window. All I have had any desire to eat are the foods I ate as a child when I was sick. Soup, canned peaches and a little yogurt. Although when I was a kid it was probably vanilla pudding instead of yogurt. The big difference is that now I have to make the soup, there is no caring parent to do so. I think basically one just wants one's mommy when sick.
I notice you posted a list of all the chemotherapy drugs, I had to skip over that one. My mind has been rather gloomy anyway, I didn't want to be reminded of those days. Maybe later when my brain is better.
I did see the post from Duchess, and I do feel for her to have to be going through all this again.
I think I am going to have to venture out for supplies today. I shall have to marshal my strength, and make a quick in-and-out, no dawdling. I am not going to ask anyone to do it for me, I have very specific brands of things I want and better to do it myself. I think.
There is also a life-and-death battle going on in my house, somehow a mouse has entered. I have set up traps but so far he hasn't fallen for them. I am walking around armed with a shoe, and ready to strike. So far the mouse is winning.
I shall talk to you again soon, love,
Mary
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