Calling all triple negative breast cancer patients in the UK
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Hello Gill and Mary,
I am writing this on our thread in the hope that you will be able to click on the forum as I am doing. I found it very easy to do but it is slow. I clicked on Breast Cancer forum and it took me to the list of threads. I then clicked on our thread and it took me straight to my last post, which was the only recent post. I then did this post and will then click Submit. I do not know what will happen if I tried a long post, but that was happening anyway if you did not type in Word and then copy and paste.
All is well here, but not in this country.
Love and best wishes.
Sylvia xxxx
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hurrah I'm here. I'm just going to write a quick line to see what happens. Fingers crossed as I post!
Mary
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Hello Sylvia,
Finally worked! Wonder how long for?
I haven't seen any news about breast cancer recently, first Covid and then the Ukraine invasion seems to have resulted in medical information being left out in the cold.
I do have something interesting to tell you though. I remember you mentioning that you had no problems with lymphoedema until you were given a flu vaccination on your mastectomy side. Last week we visited one of Michael's aunts and she told us that her daughter had the same experience with an injection. She was told by a nurse at her local health centre that it was fine to perform vaccinations on the same side as her breast surgery. It wasn't. She now has to wear a tight sleeve permanently. When I refused to allow a zoledronic acid infusion on my affected side, I was told by the chemotherapy nurse that it was recently discovered that it didn't cause problems after all. I wonder if anyone else has been told this? I think anyone who has undergone breast surgery would be wise to avoid allowing injections on the same side, especially following lymph node removal.
Love,
Gill xxx
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Hi Mary,
Congratulations! We can all feel that we've achieved something amazing today.
Love,
Gill xxx
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Hello Gill,
It looks as though we are all managing to post,but the format for the posts looks very austere. In my photograph I have no head.
I did not have my flu injection on my mastectomy side in 2017,but I still had a swollen hand and arm. I was told it was all due to the fact that I had not had a flu injection since 2005 when I had to have one when I was diagnosed. Apparently, the 2017 injection would have flooded my body with antibodies. I did get myself referred to the lymphoedema clinic, was given sleeves and shown exercises. I soon decided that I was not going to wear a sleeve, just did exercises, and soon left the hospital clinic. I have been fine since, no problem with vaccinations or injections recently and just do some exercises when I feel like it.
What you have to say about Boris Johnson does not surprise me. The population is brainwashed and we only get the version of the truth that suits those in charge.
That is about all for now. I do hope that we get rid of this new format. It makes everything seem boring and uninteresting and boring. Raymond says it is sterile!
I do hope Mary will tell us a bit about her stay in Scotland.
Take care.
Love.
Sylvia xxxx
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Hello Sylvia,
I forgot to let you know. That Mary has emailed you, but from what you have said, I don't think you've received them. Try your spam folder. If there's nothing there, send Mary a private message with your email address - I'm now beginning to wonder if I made a mistake when typing it.
Wishing you and Raymond a peaceful evening. Tell Raymond that 'sterile' perfectly describes the new site.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post. I did check but there was nothing in spam. I have had one email from Mary with a photograph, but nothing since then.
I think we should try to post on the thread so that we do not get into a muddle.
I do hope that, at some point, we shall be able to focus on triple negative breast cancer, or at least breast cancer. It is just shocking the state of cancer treatment in general in this country. The NHS is simply NOT functioning.
I do hope that we shall soon have the Sue Gray report and the police report on the Prime Minister. His behaviour should not be forgotten. This country needs to wake up. Today's PMQ was again not much good, except for Angela Rayner. It is about time the Speaker stopped the yobbish yelling and uproar from the Government benches.
It has been a dismal day here and all in all I have felt quite unmotivated.
I do hope Mary will get back to posting on here and let us know what she thought of Scotland.
Thinking of you and sending best wishes. Keep safe. COVID is on the increase again.
Love.
Sylvia xxxx
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Hello Sylvia,
Bright sunny day here, very different from yesterday, when the skies were full of Saharan dust. Woke up to find the windowsills had turned orange and the front windows covered in sandy dust.
It was reported yesterday that cancer patients were on long waiting lists for treatment before the pandemic. In Norfolk we were all only too aware of this. My argument is with the postcode lottery. We all contribute equally via taxation, so why on earth is this allowed to continue? Specialist cancer centres distributed fairly across the UK would solve this issue.
I have just heard that free palliative care is being withdrawn from 43% of patients who outlive their prognosis. Another 15% will be offered only limited NHS nursing care, rather than full support. Don't get ill, don't get old.
Love,
Gill xxx
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hello all!
At the moment I'm sitting in dentist office waiting to be called. I had several appointments that I had to reschedule before Scotland, this is one of them.
Really enjoyed my trip, it started with a bang, when we arrived in London. We were told our flight to Glasgow was cancelled, not just our trip was affected but almost everybody getting off planes and arriving in the terminal. We got in a long line of upset people and after about an hour we're told by a British Airways lady that standing in line would bring us nothing, we should leave the airport and go online with BA. I think they called in a lot of people with calm voices to talk to the hundreds of passengers milling around. We asked about our luggage and were told leave the airport, go online. All would be taken care of there.
So we discussed what to do, stay in London until we got another flight .
To be continued
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Hi Mary,
Hope the dentist appointment had a happy ending. Good luck with assorted postponed appointments yet to come.
Travel is still more complicated post Covid and Brexit. Just one problem after another here. I'm glad you enjoyed Scotland - despite your airport experience, the late arrival of your luggage and the cold and windy weather. You chose the right time as Covid infections are rising steeply again.
I don't like the new site at all. I can't find my favourites, the entire site is far too slow and It doesn't allow me to stay logged in permanently as it did before. I can't see the reason for change.
Have a peaceful weekend.
Love,
Gill xxx
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Hello Sylvia,
I have decided to become an occasional poster here. We have so few people posting now and no one recently diagnosed at all. Of course, the new site has added to my frustration. If I see any new findings concerning triple negative or metaplastic breast cancer, I shall let you know straight away.
Have a peaceful weekend.
Love,
Gill xxx
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Hello Gill,
Thank you for two posts. I am sorry I have not replied before but, like you, I feel very frustrated about the slowness and lack of appeal of the forum in general. This morning it was so frustrating and I found that it had forgotten me, that I had to log back in and found myself on page 1 of the thread looking at FreddieDLH who was the first poster back many years!
I also feel quite tired and unusually lacking in motivation for the day ahead. This is not me. I am dealing with quite a few issues, including keeping an eye on my cousin and making medical phone calls on his behalf, worrying about my only remaining aunt who is back in hospital with two large clots on her lungs, probably from COVID and the vaccinations.
I do understand what you say about becoming an occasional poster. As you say, there are no new posters on our thread and there is very little news about any progress with breast cancer of whatever type. I did watch a programme on what seemed to be a Japanese or Korean channel. It was about research into cancer treatment, immunotherapy, and the difference between cancer cells and something they were calling KNT cells which somehow have a memory and can fortell what is likely to happen and somehow stop recurrence and spread. I need to investigate more. It was said this could eventually lead to a cure for cancer. it was not a gimicky programme but a very serious interview with learned researchers.
I had to laugh at Mary's experience at the airport. Welcome to the chaotic mess that our country is in.
We can now get ready for scaremongering about Covid and the need to have the "Spring Booster".
That is all for today. I understand that you had red Sahara sand your way.
Take care and keep safe and sound of mind admidst all this insanity and hypocrisy.
Love,
Sylvia xxxx
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Hello Mary,
It was good to see you on the thread.
I look forward to hearing the rest of your story about your trip to Scotland.
I hope all went well at the dentist's.
Love and best wishes.
Sylvia xxxx
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sylvia and Gill
I'm on the BC site I think!
Mary
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Hello Mary,
I have just managed to get on our thread at a snail's pace!
I did send you an email earlier today. it was to you and Gill.
There is not a lot to say from here until we can get ack to normal.Please let me know that you received my email.
Love.
Sylvia xxxx
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Hello Sylvia and Mary,
It's working! Still very slow though.
I received both of your emails. As Mary said earlier, thank heavens the three of us shared our email addresses.
Talk soon.
Love
Gill xxx
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Sylvia, I did get your email and also Gills, thank you!
Yes, this site is sooooo slow!
Pluses so far: this text self-corrects. Also, I don't have to log in constantly. What's next, I wonder?
Love, Mary
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Hello Mary and Gill,
I have been having a look at the forum today and think that it is not quite as slow as it was. Things seem to be improving. I was able to have a look at the section Active Topics and was surprised to see that it went to six pages, so I had a quick look at those. Our thread was on page 4. I noticed that on this Active Topics section there was quite a lot of activity for March 25th.
I would be interested to know what you think, if you post on our thread.
I am not sure what to post any more about triple negative breast cancer. At the moment we just seem to be repeating what has already been said about diagnosis, treatment and life post-treatment. I am not far off 17 years since diagnosis and still do not take anything for granted. I keep to a very healthy lifestyle, keep active physically and mentally and try to avoid stress. I tend to worry about things so often feel anxious inside of me.
Everything now seems to be overtaken with the occupation in Ukraine, even though we still have serious problem of coronavirus in the UK.
I am going to keep this short in case I lose it.
Let us hope we all come back together again soon.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia and Mary,
I agree with you Sylvia, there doesn't seem to be anything more to add to the triple negative discussion, unless there's some serious new treatments in the pipeline or some better news about breast cancer funding in ALL areas of the country.
The site is much quicker today, though I did need to sign in again. The previous site allowed me to be permanently signed in.
I'll continue to drop in from time to time and I hope Mary will do the same. I'm always interested to hear about events in America.
Like Sylvia, I worry about almost everything more than I used to. It's a particularly anxious time at present. The world has become extremely unstable and the UK is unrecognisable. Our quality of life, healthcare, cost of living is in crisis.
Another sunny day here after a foggy start.
With love to both of you.
Gill xxx
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Hello Gill,
Thank you for posting. It is sad that there is nothing new or inspiring coming to our attention about breast cancer in general, triple negative status and the various different breast cancer types. It would be good if we could hear the experiences of anyone diagnosed with breast cancer since Covid in March 2020.
As you say, we need to have good breast cancer care throughout the UK and not the postcode lottery that we seem to have.
There was something on Radio 4 news this morning about some test to be funded by the NHS, blood or saliva test, to detect whether prescribed drugs will work for a patient or not. It is all to do with genes. I am not quite sure how this will work out and whether it will be bureaucratic. It is not very encouraging to know that people may be swallowing down drigs that may be doing no good. There was mention of the fact that codeine did not give some people any pain relief.
I see that the police reports on Partygate have come back to life. I bet we do not see the results that we want.
Covid seems to be back in a big way!
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I wrote an entire post here, which was promptly lost somewhere in the tangle of this new forum as soon as I hit Submit
I'll try to remember as much as I can and resubmit.I am not from the UK but truly appreciate your welcome to non-UKers. I live in the USA, in New Jersey (east coast). This is the only forum I could find for TNBC. I've read many of the more recent posts on this thread and have been encouraged by your words.
I was diagnosed in January of this year. The lump in my right breast is 3 cm. Thankfully, there are no genetic issues or signs of metastatic breast cancer. My chemo began in February. Tomorrow will be #9 of 12 in my first round. My infusions consist of Taxol and Carboplatin every week. I also received Keytruda on weeks 1, 4, 7, and will receive another on week 10.
When I was diagnosed, the doctors encouraged me to take a leave of absence from my teaching job because of the risk of COVID (and other small child regular germs). I've also been encouraged to isolate, which I've been doing. I'm an elementary school teacher and have been working for a long time, so thankfully, I have the sick days available to use. Though the mask and other restrictions have mostly been lifted in New Jersey, there is another strain beginning to rear its ugly head in New York (just to our north). Not sure how soon or severely that will affect us here in NJ.
I've had a host of side effects, many of which you all have probably experienced. I'm dealing with those (with the help of my wonderful husband) through diet and some limited medications.
Prior to this diagnosis, I was a healthy, active person. This was a huge jolt. I was devastated by the news and also with having to give up my job, which I love. But reading your posts has given me hope and encouragement.
Thank you so much for allowing me to post here.
Sue
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Hello Sue,
Thank you for your interesting post and welcome to our thread, which I started nearly twelve years ago.
I was glad to read that you have found encouragement by reading some of the more recent posts. I was sorry to read that you had lost what you posted and had to re-submit. I do hope the forum will get back to normal very soon. I have noticed that when I have been posting lately I have to keep signing in and the thread comes up on page 1 with FreddieDLH who was the first person to post here way back in 2010.
Thank you for giving us the details of your diagnosis and your treatment so far. I was interested to know what you are having in the way of chemotherapy treatment. I do hope you are not suffering too many side effects. From what I can see of your treatment you are not getting the older drugs that are still being used, such as doxorubicin and cyclophosphomide. When I was diagnosed back in 2005 paclitaxel (Taxol) was relatively new and I actually had docetaxel (Taxotere). Both belong to the group of taxane drugs. Let us know how you are getting on with carboplatin and Keytruda.
Make sure you get plenty of rest and ask us any questions you like about what we did going through treatment.
I can understand that your doctors encouraged you to take a leave of absence from your teaching job because of the risk of Covid. Chemotherapy will have given you a suppressed immune system and made you more vulnerable to picking up Covid and other infections. You are also right to be isolating. This Covid is far from over and it is spreading here. You mentioned another strain in New York. Do you know the name? The latest one here is delta-omicron. It is very infectious.
You might like to tell us what type of breast cancer you have. The triple negative is the tumour status, but there are different types of breast cancer. The most common is invasive ductal carcinoma (IDC) but there are several others and some of which are quite rare. Gill will be able to tell you all about that.
We have had other Americans on the thread and I am sure that Mary will pop in to say hello.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Thank you for your reply Sylvia!
My diagnosis is IDC. When I first got the diagnosis, it was frightening to see the images and the picture that my surgeon drew for me. Then I did a lot of reading and wrapped my head around it. Everything moved so quickly, it was a whirlwind of doctors, scans, and procedures to begin chemo.
The side effects knock me out for 3 days following an infusion. I've got the reflux fairly under control with an additional med and my diet. After an infusion, I get chills and a slight fever, which never goes above 100 degrees Fahrenheit (37.8ish Celsius), so no one is too concerned. Tylenol works for a time. I have to really force myself to eat on those days. They're awful. But the next three are better, bearable, and approaching "normal."
Omicron is back but with a sub-variant called BA.2. It's bad in New York, particularly in Manhattan. Many people live in New Jersey and commute to work in Manhattan, including many of the parents of children with whom I have worked. Virtual offices have been good to keep people safe, but that can't go on forever.
Right now, it's about 3 am and the steroids are keeping me awake. I originally woke with a panic attack, which I managed. In my life before breast cancer, I took VERY few meds, walked about 15-20 miles per week, and worked a full time job. Now, I knit, do jigsaw and other brain puzzles, read, write, and try to stay healthy. I try to get outside for walks, but the temperatures here a rather cold, which I hate. On nice days where I'm feeling well, I walk about a mile or a bit more.
I'm trying to go back and read more posts in this thread, but staring at a computer isn't my favorite, especially after days of remote teaching during COVID. I'd love to hear how you all managed the after-infusion blahs. And my current fight against SUPER-DRY skin. It's a battle every day.
Thank you, Thank you! I'm glad I'm here to share wisdom.
Sue
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Hello again, Sue,
Thank you for letting us know that your diagnosis is IDC. I can imagine how frightening those images must have been for you. I did not experience that and I do not think I would have liked it. I had a large tumour and had chemotherapy before surgery in order to shrink the tumour and make surgery easier. I was told at diagnosis that I would need a mastectomy after six months of chemotherapy and that after surgery I would need three weeks plus boosters of radiotherapy. It is true that there is a lot of activity when you are first diagnosed but then everything settles down and you get into a routine. I had a CT scan and a radionuclide scan before starting chemotherapy.
I had chemotherapy every three weeks but now it is very common to have weekly infusions and the patients who have gone through the thread have said they find the weekly treatments easier to bear. I was very lucky with chemotherapy because I did not suffer some of the side effects that have been mentioned over the years on the thread. I was just more tired than usual and rested when I felt the need.
I am very interested in anything to do with good nutrition and health. We have discussed these topics quite a bit on the thread. What kind of diet do you tend to follow?
It looks as though the variant you have in the US is the same one we have here in the UK. I have heard it called Omicron BA2 as well as Delta Omicron. My husband, Raymond, and I have managed to remain free of it but we keep ourselves isolated and do not take any risks. Have you had all the vaccinations? Here they are now talking about another booster for the Spring. We have reservations about it, given all the bad news coming out about these vaccinations.
During chemotherapy just do what you think you can do without feeling overstressed. Keep well hydrated, especially with water and especially straight after chemotherapy. Keeping hydrated will help with your dry skin. I used to wash my hair (scalp) and skin with avocado oil during chemotherapy and I still use it for my skin. It mixes well with water. There is also a good product for dry skin called Aloe Vera gel. It is easy to put on, absorbs into the skin and is not messy. It comes in a tub and you can get it online.
That is about all for today. Take care and keep safe.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I've just dropped in to reply to Sue's post.
Very dull and quite cool here. No more sunshine this week.
Love,
Gill xxx
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Hello Sue,
It sounds as though you did everything right to keep yourself healthy. Unfortunately, cancer can take up residence (temporary) in healthy bodies and unhealthy alike. Don't spend time blaming yourself or asking what you could have done differently - it's all fairly random. For now, concentrate on getting through your treatment and take one day at a time. Rest when you need too, eat when you feel like it - it doesn't have to be healthy food either. My appetite disappeared completely once I started the Taxol infusions and I lost a lot of weight, causing, my protein levels to fall to such an extent that the oncologist warned that she may be forced to stop chemotherapy altogether. Protein intake is important during chemotherapy. Cold chicken was all I could face at the time, but it worked.
The good news about triple negative breast cancer is that it responds extremely well to chemotherapy. I have a subtype of triple negative (metaplastic) that often fails to respond at all. In my case, because metaplastic cancer is extremely aggressive, I had my mastectomy before treatment, so I have no idea how my tumour responded. Metaplastic cancer doesn't have a good prognosis and local recurrence within a year or two is very common. However, it's three and a half years since my surgery and no recurrence at all. Remember, Google is not your friend. There's so much pseudo science out there and you'll find plenty of doom and gloom if you go looking for it. In reality, the majority of triple negative patients survive and go on to live normal lives. After a while they disappear from the thread as they become too busy to contribute. After 3 years of being recurrence free, the chances of triple negative cancer returning fall dramatically. After 5 years it rarely returns. So, you have a lot to be positive about, it might not seem so now, but Sylvia and I both feel that given the choice, we'd prefer triple negative to any other type of breast cancer.
Panic attacks are understandable and quite normal. You're on a rollercoaster that you don't want to be on at the moment. The time will pass and this will end. Remember, just one day at a time for now.
Love,
Gill xxx
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hi Sue,
I'm so glad you found us, this forum was a lifeline for me back in 2014. I knew quite a few women with BC but none were TN. I felt quite alone and when I landed here I found kindred spirits.
I was a very active 61 year-old when I got the diagnosis. In my large extended family I had only one aunt who had cancer, that cancer was BC but she lived to an old age. So it came as a big surprise to me too, and my husband was also ill at the time so it was all just too much at times. That was 8 (!) Years ago and my husband passed 7 years ago. The cancer treatment was quite rough on me; it's interesting that you are being given Keytruda, that was not around when I went through treatment.
I am in Missouri, quite a ways from you, but just a keystroke away really.
We'll talk again soon, love, Mary
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Dear Sylvia, Gill, and Mary,
I cannot thank you enough for your responses! They lifted me up and even though my infusion yesterday was exhausting and I'm having a rough start to the day, I feel mentally like I can take it!
I totally agree about Google! In fact, I remarked to my husband that there is just too much information on the internet and so many contradictions that it's difficult to sort through. Luckily, my doctor says he's happy with the way my numbers from the blood work.
Keytruda is a fairly new drug. I read about some of the trials and listened to a podcast interview of a UK doc who did some trials. Side effects are difficult to deal with--my periodic keytruda infusions cause some slight fever, chills, headaches, stomach aches, and total exhaustion the next day. It's scary. But the podcast doc was very positive, especially for TN patients. He saw reduction of the tumor in many cases and he's continuing his research to explore recurrence (the study is too new to tell as yet). So as long as the keytruda is doing its job, I'll deal with the side effects. I have a keytruda infusion next week.
I've always been a healthy eater, so switching my diet wasn't hard. I had a lot of acid reflux in the early days, so I gave up a lot of my favorite spicy things. I've added back some of my favorite foods over the weeks so that I can keep my weight consistent and have some joy in eating. The sores on my tongue and lips prevent some enjoyment, but I've switched to plastic spoons and forks, bottled water, and foods that irritate my tongue or lips.
I want to say that all of this looks a bit brighter to me today because of your posts. I truly am grateful that I reached out here!
Love, Sue
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Hello Sue,
Thank you for your very kind words and interesting post. We are only too glad to help and support you through all this treatment.
I agree about Google and that there is too much information on the internet and that you have to be very careful about the information and check the source. There has been too much scaremongering about triple negative breast cancer and how aggressive it is. All breast cancers are aggressive. I have repeatedly said on this thread that I have always felt positive about being negative, because, unlike those people with hormonal breast cancer, I have not had to go on anti-hormonal medication for years. A lot of that medication has nasty side effects. Back in 2005 when I was diagnosed, certainly in the UK, there did not seem to be mention of triple negative. I was told that I was non-hormonal and the prognosis was not good, because I could not be treated after the standard treatment. I chose to ignore this and still do, nearly seventeen years on!
I was sorry to read that you had such an exhausting and rough day yesterday. Just rest as much as you need. Unfortunately the side effects from chemotherapy tend to build up as the treatment progresses.
How often do you have the Keytruda (pembrolizumab) infusions? I remember a friend of mine here with melanoma cancer was having this and was very unwell on it. It belongs to a group of drugs known as monoclonal antibodies or immunotherapy drugs. It would be interesting to hear from anyone else taking this drug. The idea of all chemotherapy drugs would be to shrink the tumour. We shall be thinking of you next week and hoping all goes well.
Like you, I have always been a healthy eater and continued this way all through treatment. We have talked a lot about nutrition on this thread. I eat lots of fruit and vegetables, as well as nuts, seeds, pulses, beans etc. I do not eat any meat or poultry but eat some wild red salmon. I steer clear of all dairy products because of the growth factor element in then but I do have Alpro soy unsweetened drink enriched with calcium and I also have soy unsweetened plain yoghurts. I eat tempeh and organic nut burgers for protein. I also take Solgar high dose vitamin D and take them with magnesium tablets. I do not drink alcohol.
I did not put on any weight during treatment and I have always remained tall and slim.
You can get special toothpaste and mouthwash that is especially useful during treatment. I shall try to think of the name of the brand. It keeps ulcers etc. at bay.
I drank a lot of ginger tea during treatment and never had any kind of nausea from treatment. I am a great green tea drinker and buy Clipper organic green tea, a mixture of loose green leaf tea and tea bags.
That is about all for now. Please remember to ask any questions that you feel like asking.
Thinking of you and sending best wishes across the pond.
Love.
Sylvia xxxx
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hi maryna8,
I'm an italian student currently studying about the Triple negative BC.
Could I ask you, if it's not a problem, some quastion about yout diagnosis and the treatment you recived?
Thank you
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