Calling all triple negative breast cancer patients in the UK
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Hello everyone,
I do hope all of you have had a good week and that there have been more positive than negative aspects to it.
To maryna8 in the US, Hanieh in Iran, adagio in Canada but travelling in Australia, AmandaD in England and Michael in Northern Ireland, I hope you are all well and happy and want to say many thanks to you for keeping loyal to posting for quite a while now.
To the newer group of people, Kath in Australia, ChrisAsh in England, Claudia in the US – how is chemo going? - , Pam in the US - chemo will soon be over – , Rhond in New York, Val in the US, and 4everstrong in Paris, France.
I am always glad to hear from all of you.
Sending you best wishes from gloomy Exmouth. Summer has well and truly departed!
Best wishes.
Sylvia
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Hello all,
It has been a challenging week but definitely doable!
It is a beautiful fall day in upstate New York-my favorite time of year.Managed to give myself the shot of neulasta
And so far no pain.Feeling a little tired but not too bad!
Rhond
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thanks Slyvia
U are a voice of reason as always! Don't feel too bad today and I pushed for another appoint Monday as the oncologist will be in town. My taxol will
Def be at a lower dosage and start on 26th. They have given me extra dexamethasone orally to titrateoff not just the 4 tabs so hopefully that will
Help
Cheers kat
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Hi, Sylvia and all here,
I was reading over your post about the Birth-control pill, I used that briefly when I was much younger. Probably of more harm to me was my extended use of estrogen pills after my hysterectomy, but who knows? My trusted gynocologist did not think there was any harm it it, and I believed her. I am afraid that more and more of the drugs and products we used so blithely when younger are going to come back and bite us.
I was driving home today and listening to a radio station called "Doctor Radio." The commentators, 2 docs and an oncologist, were talking about ongoing research at the hospital in New York affiliated with New York University. They are studying women with metastatic TNBC, they are using a new immunology drug paired with a chemotherapy drug. They are so far finding good results with about 20% of the cases, where the tumors disappear. I wonder for how long? From what they said, I understand the trials are still open to applicants, but I looked online when I got home and it looked like they were already in Phase 2 of the trials. I think it works by the chemotherapy drug weakening the cancer cell, and then the body's own immune system goes in and kills it, ideally. That is a very simplistic explanation and may not even be right, I apologize in advance for my description. The oncologist said at one point that the TNBC usually starts as hormonal and mutates into the Triple-Negative. She said they are really working to find something that works because if TNBC recurs in a patient they have a much lower chance of surviving 5 years than does a patient with hormone+ cancer. Mainly because the E+ patients are taking the Aromatase or Tamoxifen etc.
Listening to these docs cracking jokes and also speaking so clinically of the disease that we all share, and death rates, and survival chances made me feel uncomfortable, to say the least. I really had to shake off a gloomy feeling about the whole thing. It's as if we're only numbers and statistics to them. It's funny, I can come here and talk about all this and feel rather positive about it all.
Autumn has arrived for us too, it is 45F this morning, it promises to be a crisp, sunny day. I have another wedding to attend, then no more weddings for awhile.
I shall talk with you soon!
Love, Mary
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Hi, Rhond,
Glad you are having a nice day and feel good after what you have been through. I was in upstate New York years ago, and found it very beautiful. I was in the Woodstock area, but a few years after the big event there!
I am surprised you got to administer your own neulasta shot. I had to have a shot after every chemo infusion too, it always involved another trip to the clinic on the day following the infusion. I asked the nurse if I could take the shot along and give it to myself instead, but she said that was not allowed anymore. So it was another hour-long round trip just for that.
Enjoy the fall weather!
Mary
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hi everyone
Bit of a rough day today but keeping myself hydrated and resting. Try not to knock myself around too much but I always seem hit something and panic lile the back of my shoulder when I sat down hard today ha ha! Need to keep reminding myself that the cancer is gone and I wont aggravate anything!
It's very warm and windy here today. 35 degrees Celsius so an Aussie summer definitely on the way. Hope everyone is well and I start taxi on 23 rd October
Cheers
Kath
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Hello Everyone,
Here is the latest report from one of us whose chemo is almost over. I got up early yesterday for the chiropractor, who is helping me with the pinched nerve that's causing numbness in my foot. Then I made a quick stop at the grocery store. I did laundry and got a nice nap. Finally, I spent about an hour cooking dinner, and received a sweet card from a friend. This used to be a pretty typical Saturday for me, and I was so happy to have the energy for it. As someone observed, it was great do the things I used to do without a thought. If my blood tests are good, I go back for my 14th of 16 chemos this Tuesday. I'll meet with my surgeon this week as well.
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Hi All
Been a long time since my last post!
Just a quick recap for anyone, my wife was diagnosed with TNBC in Oct 2014 while 15 weeks pregnant. She has surgery right away, then chemo (FEC and three round of Taxol) stopped chemo to give birth and then straight back on to Taxol. She is now two since since diagnosis, and touch wood so far so good. Our baby boy, is now 18months old and is a picture of health. Lively, totally mental and into everything - but i wouldn't have it any other way.
My wife is due to have her other breast removed in December and the reconstruction. A double MX could not be done at the time since she was pregnant and the risk of blood loss could have affected the baby.
I've not had the time to post I guess becasue life has moved on. The kids take over and of course work takes over!. We do get scared of it coming back. Every ache or cough causes some concern. But like I said my darling wife is two years out and so far so good.
Anyway, I hope all of you are as well as can be. For those going through this right now, all i can say is there is light at the end of the tunnel and life does move on. It certainly changes, but does move on. And remember don't believe the rubbish online. Most women survive TNBC!
Love to you of all - each and everyone of you are so brave. And well done to Slyvia for keeping this thread going!
Tom
xxxxx
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Hello Kath,
I was glad to know that you are not feeling too bad. You should gradually improve even more and start to feel normal.
Thinking of you.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I also took the birth control pill for a few years so, as you say, who knows what that did? I know from the questionnaire that I filled in when first diagnosed that the birth control pill was already down as a risk factor, along with early onset of periods (which I did not have) and late menopause (which I did have). You can see how all these things can add up.
It is true that all of these drugs that were used without a second thought have come back to haunt people. So many women were put on HRT to relieve menopausal symptoms and were left on them for far too long. I know women who had breast cancer and are convinced that taking HRT played a role. Today there are women on tamoxifen and aromatase inhibitors after finishing treatment for hormonal breast cancer. Who knows what will be the consequences of these drugs? All of these drugs have side effects.
I was interested in what you heard on Doctor Radio. My oncologist said, back in 2005, that my TNBC did not necessarily start off as such but could have started as hormonal and mutated into TNBC. It is hard to know what to believe and is not that important, because, however it started it ended up as TNBC. I have also read that taking tamoxifen to treat hormonal breast cancer can cause you to end up with triple negative. It could be that all these drug treatments are too extreme. I also remember reading about how researchers were trying to find a way to turn triple negative into hormonal, so that they could treat it with their drugs! Whatever is done, the patient always ends up on lethal drugs.
The latest news I heard was that doctors are now saying menopausal women should be given testosterone. I know that men with prostate cancer are treated with female hormone and develop breast and body fat. Where are we going?
It is my own personal belief that whether you get recurrence or not is a bit of luck, no matter what you started off with. My friend and neighbour died a few years ago of metastatic breast cancer. She was 59 and triple positive. She took so many drugs once the cancer had spread. I have someone else here with hormonal breast cancer but HER2-. She was in the clear for 15 years and then the cancer spread. She is on oral capecitabine (Xeloda). She is slim, a great walker and takes care with her diet. It was the same with the one who died.
I think, unfortunately, we are just numbers and statistics. The whole scenario with cancer seems to be to produce drugs.
I do hope you will have a read of the free magazine, Vita. At least the articles in this magazine as well as the letters are written by people who have been through cancer. I was reading a letter about a woman aged 80 now, who had breast cancer at the age of 32, was in the clear until age 75 and then it came back. It makes you feel so afraid and know that you can never be sure when it will come back.
You can get I n touch with Vita by tweeting at @Vita_mag or email vita@breastcancercare.org.uk or you can write Vita Magazine, Breast Cancer Care, 5-13 Great Suffolk Street, London, SE1 0NS.
You can also visit Vita online www.vita.org.uk
It says "Read our real life stories and healthy living articles. Download the latest and past issues. Check out our blog on living with breast cancer".
There is also interesting information about secondary breast cancer (also known as metastatic breast cancer or stage 4 breast cancer). The title is "Secondary. Not second rate." This is all about how patients with secondary breast cancer feel invisible and that the treatment they are getting is nothing like they got when they had primary breast cancer. Apparently some hospital trusts in England are not even keeping statistics on the number of patients diagnosed with secondary breast cancer.
There is a very good article with questions and answers about lymphoedema and how to reduce the risk.
There is much more in this magazine and I shall try to post a bit more sometime.
That is all for today. It looks as though we all need to settle down for autumn.
Enjoy your wedding.
Fond thoughts.
Sylvia xxxx
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Hello Rhond,
I was glad to know you are coping well. Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Hello Pam,
It was so good to hear from you and to know that you are managing a normal routine while still on chemotherapy. I think this is as good as any therapy and it was what I tried to do.
I hope all goes well tomorrow. You are nearly at the end of your chemotherapy journey. Well done.
Fond thoughts,
Sylvia xxx.
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Hello Tom,
It was so lovely to hear from you and to know that all is well with your wife two years since diagnosis. Congratulations. You sound such a happy little family. I can understand what a busy life you must be leading.
I hope all goes well with the future surgery.
I really appreciate your taking the time to pop in to let us know that all is well. So many people just disappear off the thread and we have no idea what has happened to them. We just hope they are all well.
Best wishes to you and your family. Pop in when you can.
All the very best,
Sylvia.
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hi all,
Terrible day today so anxious! Completely lost it when I went to grocery store!nkeep try to be positive but soooo hard! Does this ever get any easier
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I have had a couple of depressing days but am starting to feel better. I know what you mean about staying positive
But sometimes it bothers me that people tell us to
Be positive like you can control it. My appetite is coming back and I am not taking any anti nausea meds-it has been almost a week since my first treatment.I guess one day at a time
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Hello Kath,
I was sorry to read that you are having a bad day. Is it just feelings of anxiety and if so what is the exact cause of the anxiety? Are you feeling anxious about starting 12 weeks of Taxol? You have got through your AC and that is all behind you. Are you feeling side effects from the last AC? The first week is the worst, but you should soon start to pick up. You will get through this and the chemotherapy is the worst and longest part of the journey.
If you feel that your anxiety is out of control then you should go for counselling.
Try to rest as much as you can as this will help your immune system.
Worrying will serve no purpose. All of us on this thread have been through this chemotherapy journey, and have good and bad days, but we have come out of it all and so will you.
You might want to try some relaxation therapy.
Thinking of you.
Love
Sylvia xxxx
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Hello Rhond,
I was sorry to read that you have had some depressing days. Can you tell us exactly what has caused this?
Focus on the fact that you are now nearly a week since your first chemotherapy session and you will start to feel better. You are already saying that you have more of an appetite and are eating better. Focus on that and forget the bad couple of days.
I know we all talk about being positive and we wonder about it because it often seems that this disease is controlling us. However, being negative about it all serves no purpose, so why not decide to be positive and keep looking forward to the day when you have finished all your treatment and you will start a more normal life.
You and Kath should talk together and help each other.
Sending you my very best wishes.
Sylvia xxxx
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I don't know what caused it I just felt like
I didn't know how I would be able to go through
4 months.Today I decided I will just focus day to day
And do the best I can.I agree with being positive and I am doing better.Today I sat in the sun for a little while and took a short walk.Thank you Sylvia for your encouragement.
Rhobda
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Hi all,
i am back to my day to day hectic life with the kids, work and gym routines and daily obligations.. didnt really have time to check-in and reply. This Friday will be my first follow up appointment.. i have a Pelvic and breast MRI to do before my appointment with my oncologist along with bloodwork.
and this is when anxiety wants to join my spirit and this is me not letting it in by trying to stay positive.. i have a flu/ cold so hoping this is that and nothing else..
wanted to say hi to all and sending you all positive vibes..
keep exchanging and supporting each other
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hi Sylvia
Just so scared I think! I'm ok then reality hits! . Need to start focus on early diagnosis. Been get counselling but they just want to give me antidepressants which terrify m
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Hi, Kath and Rhonda,
I think it is normal to feel worried and anxious, you are going through a lot, and on top of that, you are told there is a chance it could come back again.
I got really tired of being told "one day at a time, take one day at a time", but it really does work. Until you are finished with your treatment it is going to be very hard to plan any farther than that, so you might as well go with it. Just do what you need to do each day, and if there are things you don't feel like doing, it's okay. If you have to work, then don't plan anything else that day, but rest and eat. If you don't have to work, then don't worry too much about cleaning the house, or polishing the silver (smile). If you feel like doing it a little at a time, then that's the way to do it.
If you are having panic in the grocery store, you may be trying to do too much. Maybe someone could help you shop, and take some pressure off. I have a wonderful friend who is not in good health herself; she insisted on taking me to every chemo and she would go in the store with me on the way home if we needed to do so. When I was hospitalized after my first chemo treatment, she stayed every night with me.
My sister-in-law had BC 30 years ago, she had small children and would be too tired to take them to their rooms for a nap when she was doing treatment. So they would just lie on the rug under her dining room table with pillows and pretend they were in a fort. They would all take a nap there.
Don't think too far out, the day will come when it's finished and then the day will come when you feel better again. That little bit of fear we all have to live with, unfortunately!
Hope this helps, I've been there too, and am still here,
Mary
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thanks Mary helps a lot! Been try to cope but they keep want to give me antidepressants. Have good days but the media don't help and we have had a few high profile deaths of late which have scared me no end!
Cheers
Kat
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Hi, all,
It's a very sad day for me, I had to put my kitty-cat, Rascal, to sleep, we had her for 21 years. She was under the hood of my husband's truck when he started it one cold morning all those years ago. She jumped out, and when we found her she had a broken leg, so we had it fixed and kept her. She's been just the sweetest cat. But old cats tend to have have kidney problems, and her kidneys shut down. I will miss her a lot, now I really am alone in this house!
Just wanted to share that, hope all are well.
Kath, I understand about the anti-Ds, I had a lot of nerve pain after chemo and as I made my rounds of docs trying to figure it out I was always offered the pills. I told them I was depressed because I was in pain, if I could get rid of the pain I wouldn't be depressed! Anyway, I didn't take them, things did get better. I do know quite a few people that do take them and have no problems with them.
Talk to all soon,
Mary
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Hello Sylvia and all,
All is ok here. Liz is now just over 5 years clear. I do still read this thread but not in so much detail as I used too.
Liz has very bad aches and pains in her joints, if she walks more than a mile she will be up all night with hip pain. she manages to go Jive dancing once a week. all the aches and pains we believe have been caused by the chemo. Another friend that had cancer 2 years ago is also getting bad hip pains and unable to sleep at night without pain killers. Liz is still on HRT and that helps her a lot.Liz has had tests and xrays for the joint pain but they can find nothing.
I have to say neither of us think to much about the cancer coming back now the first 5 years have past. We try to enjoy life and travel but we do not seem to be that good at it but we are getting better at getting away. We recently had 2 weeks in Florida and we will be going back to Iceland next month.
Peter
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Hi, Sylvia,
I am heading off to Texas this morning for the seminar with the doctors, and health experts. We shall see how that turns out.
I am going to check out the Vita website when I get back, looks interesting! If I have time, I will check it out while I'm gone.
Have a good weekend!
Best, Mary
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Hello everyone,
I have read all your posts and just wanted to say that I have been so busy this week that I have not been able to reply to them all. I shall try to post more tomorrow.
PeterandLiz, I was so thrilled to see you had popped in to say hello. I shall talk more tomorrow.
Best wishes to all.
Sylvia
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hi all
Feeling a bit more human today. Paxitaxol to start on 27th still very anxious that they may have missed something but focusing on no lymph involvement and small tumour with great excision margins
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Hello Kath I was glad to read that you are feeling a bit better today.
I have made a note of your date to begin paclitaxel(Taxol) and we shall all be here for you on that date.
You will get through this. Try to relax and stop worrying. When all your treatment has finished and you are told how everything looks tell yourself that it will be NED.
Fond thoughts, Sylvia xxx.
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.Hello Mary,
I hope all goes well with the seminar and I am sure you will have lots of interesting things to tell us when you get back.
I do think Vita magazine is one of the best magazines to read. No one knows better than the patients what we all go through.
I was so sorry to read about your cat. I can understand how that must have increased your sense of lost.
I saw my podiatrist last week and got her to test what is happening with the neuropathy in my feet. There is still no feeling and no pulse.
I shall be thinking of you.
Love,
Sylvia xxx.
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thanks Slyvia try hard but feel so isolated out here!! One day at a time. I need to kee thinking I was lucky but it's tough work. The weight loss and healthy eating has helped me heaps I just need to get my head into gear!
It has helped me heaps to see so many women survive this given the negativity that surrounds it. Try to just put one foot in front of the other
Cheers
Kath
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