Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Marias,
I have found that,if you go to google and write in What is Create Trial capecitabine with reference to breast cancer? quite a few interesting articles come up.
It looks as though this drug is used for patients who have not had a complete response to neoadjuvant chemotherapy. I get the impression that capecitabine is quite toxic, but you can get through it, It seems to be used for patients who are HER2 negative.
I hope this helps.
Fond thoughts, Sylvia. xxx.
0 -
Hello Marias,
I shall be very interested to know whether the tumour is still TNBC or whether it has mutated as we know they do,.
Keep posting,
Thinking of you,
Sylvia.xxx.
0 -
Hello thanks for your answer. I read today that the create trial is the same of Xeloda, some one of you take this?
I feel better today of my breast and my arm.
I went to walk "Nordic walking" and this was a nice walking, I only do 2 km, but I enjoy a lot I saw birds and one chipmunk-
Here is a scientific article about Nordic walking and lymphedema
https://www.google.com.co/url?sa=t&rct=j&q=&esrc=s...
I hope you have a nice night
Abrazos
Marias
0 -
Hi everyone
Hope u are are all doing well? It's winter here and very dry. We haven't had much rain at all. Work is still frantic and my aches and pains are slowly subsiding but I think I'll be stuck with the arthritis . My hip and back still ache but they aren't restricting my movement at all. And have gotten no worse in 6 months I am now on an anti inflammatory andfish oil tabs which seem to be work. Are fish oiltabs ok to take?
Still need to work on my mind set and I still have moments of utter fear and tears which I hate but I'm learning to control them a little better. It's always on my mind tho. The 8 th July marked 12months since my surgery and I see my breast surgeon in September. Am terrified but just keep putting one foot in front of the other. Just need to share this pic with u. Opened my front door and saw 4 emus walking down the street last week. Poor things are thirsty.
Love to u all
Cheers
Kath
0 -
Hello Kath.. I hope you going to feel better every day in your mind. I know is no a easy way. Maybe this will help
you.
I love the picture of the emu. Can you put water out of your house for them.
Abrazos
Marias
0 -
Hello Marias,
I just wanted to let you know that Xeloda is the brand name for capecitabine. It can get very confusing. I always try to put the generic name first and then put the brand name in brackets after it. The brand name should start with a capital letter, for example,capecitabine (Xeloda).
Rhon da was going to be taking this drug so I hope she will post soon to talk to us.
Best wishes,
Sylvia.
0 -
Hello Marias,
I was glad to know that you are feeling better and that your arm is improving. Keep up the good work. You are going to get through this.
Your walk sounds very interesting.
Fond thoughts.
Sylvia xxxx
0 -
Happy Sunday Everyone,
It's my final day of vacation, and I sure needed the rest. We spent a few days in Paso Robles at a small Airbnb property within a vineyard, which was wonderful. We also went to the Mid-State Fair, which was fun for me, but less so for my husband - it was too tacky and expensive for him. He did all of the exhausting driving, which was almost 5 hours each way, plus the driving in the area where we stayed. I can see that I still do truly need a nap to get through the day.
We went to the adjacent winery for a tasting, and I loved the slightly tart/acidic wines, though I'm sure my palate is still off. The area is also a foodie heaven, with gourmet picnic stores and farm to table dining, so we definitely indulged there too. My appetite is great, unfortunately - though I always thought that appetite helped me withstand the chemo a little better.
I'm still using my Fitbit, and still think it's fascinating to see whether I've had enough activity and sleep every day. I'm planning to keep using it. On the day of the fair, we also had a morning walk through the vineyard, and we got about 14,000 steps. I activated the location on my phone so we could use Google Maps to find our way around, so my privacy went out the window for the sake of convenience.
I read 1984 years ago, but may read it again. I'm interested in reading Brave New World. Another book along those lines is Feed, by M. T. Anderson. It details a complete future breakdown of intellect and language, while it's characters receive a constant flow of marketing directly to the brain. I found it depressing and brilliant. And The Handmaid's Tale was ultimately the same, I thought, once it got going. I actually may have The Hitchhiker's Guide to the Galaxy, and I may not have read that one yet. Thanks for the suggestion. I just picked up The Glass Castle: A Memoir, by Jeannette Walls, who grew up with free-spirited, "nomad" parents and 3 siblings in complete poverty. I read about half of it in a day. It's very compelling.
Other than that, I've been adjusting to "living flat," as they say. Sometimes I wear tops that don't highlight my lack of breast tissue. That way I can skip the prostheses. It's much more comfortable. It's interesting to read about all of the women who skipped reconstruction entirely, especially compared to those who are having so many complications with implants, flaps, and all of the rest. I still haven't made a decision about that, and won't for quite a while.
0 -
Hello Marias,
Thank you for the link about Nordic walking and help with lymphoedema problems post-surgery. I can see the logic behind this. Anything that keeps your arms moving and thus the lymph circulating, is going to help. Remember that removal of lymph nodes during treatment has damaged the normal flow of lymph around the body.
I was glad to know you enjoyed your walk. I am sure that anything that is relaxing can only help. Optimism and determination are very important to get you through your cancer journey.
What kind of birds did you see while you were walking? It is exciting here to see a falcon perched high on a lamp post. The common birds are pigeons, which can be a great nuisance, seagulls can be quite frightening on the seafront here because they will come at you to snatch food. I like robins because they seem to like human company. Apparently we have a couple of owls in one of our big trees in the grounds. I hear them sometimes during autumn and winter, but I never see them.
Chipmunks were plentiful in Canada, but we do not have them here in the UK.
Keep looking forward and know that all of us here on the thread are with you.
Friendly greetings.
Sylvia xxxx
0 -
Hello Kath,
It was so nice to see you back on the thread.
Thank you so much for that beautiful photograph of the emus near your home. That is quite exciting for a London born city person like me. Are they very tame? Here in Exmouth we have foxes and badgers that wander around. People will keep feeding them so they get too lazy to look for food. I am sure a lot of these animals are now addicted to junk food.
I think we all want different weather to whatever we are getting. Here, in Exmouth, for a few days it was very hot and dry, but now we are getting lots of rain and it is more like autumn.
I do hope you are still enjoying your work, even if it is frantic.
I do hope, as well, that the anti-inflammatory tablets will give you some relief from your arthritis. What exactly are you taking? You probably miss the post when were discussing supplements such as ashwagandha, boswellia, and curcumin. They are all supposed to help with inflammation. We were reading an email from Chris Woollams about how they helped him after surgery for a rotator cuff injury.
If you have not been managing to read the thread you might want to go back a few pages to see what has been going on.
Lots of people are taking fish oil supplements to get omega 3, which we are told is important for us. You can also get this from oily fish such as wild salmon, tuna and mackerel.
It is perfectly normal to have these moments of fear and tears, but the further you go from treatment the easier it will get. You are already twelve months from surgery, so you can see that you are progressing. Let us know how you get on in September when you see your breast surgeon for a check up.
We all experience nervousness as we approach check ups. Just try to remember that the check up is there to help you and not to hurt you. I was always nervous about check ups but loved the feeling of relief when I was told that all seemed fine. Even now, I can feel anxious from time to time, because I am not having any check ups at all since I was discharged from the hospital two years ago, after having check ups for ten years. I sometimes wonder what might be going on in my body. The feeling passes and I just get on with my life.
Keep in touch and come here to talk about anything you like.
Friendly greetings.
Sylvia xxxx
0 -
Hello Pam (lilyp6),
I must say that you look really well, happy and relaxed. It looks as though you have had a really good vacation. It sounds as though you had an interesting time and did some interesting things.
I was interested to know that you are still using your Fitbit and you certainly seem to be putting in the steps.
I am just going to take a break and then do some more.
I do hope all goes well when you go back to work tomorrow.
Fond thoughts.
Sylvia xxxx
0 -
Hello Pam again,
I was very interested to know what you are reading. I have noted down to try to read Feed by MT Anderson and the Glass Castle, a memoir by Jeannette Walls. They both sound like page turners. You seem to be a great reader. In your busy life where do you find the time?
I did enjoy the Handmaid's Tale when I read it and 1984 has always been one of my favourite books, even though it was very frightening. I also enjoyed a Brave New World by Aldous Huxley, but it was many years ago that I read them. I find it difficult to find the time to read all that I would like to. At the moment I am trying to read the Organised Mind by Daniel Levington. It is non-fiction and seems to be about the overkill of everything today in the Western world. I have not read a lot so far, but I think I am going to enjoy it. Have you read Animal Farm by George Orwell? It is another brilliant book, but frightening. Have you read any of the other Orwell books?
That is about all for now. Keep in touch. I think you are wise not to hurry into reconstruction surgery.
Fond thoughts.
Sylvia xxxx
0 -
Hello everyone,
I just wanted to thank all of those who have made such a contribution to the thread this week.
Mary, thank you for all you do.
Adagio, are you getting towards the end of your holiday in Ireland and Northern Ireland?
Pam, thank you for your interesting post about your holiday.
Kath, thank you for your contribution from Australia.
Lou, thank you for keeping us informed from your corner of the world.
Marias, good to have you back and thank you for your interesting posts this week.
4everStrong, thank you for keeping in touch. We are always interested in what you have to say.
Val, keep well, keep progressing and thank you for your helpful information.
Debra, thank you for popping in with helpful information whenever you can.
Hanieh, and Amanda, we are missing you and all the information you give. Are you both travelling?
Sam52, I am wondering how you are. Did you eventually move?
Best wishes to all of you, viewers and posters.
Love.
Sylvia xxxx
0 -
Hi Sylvia,
I haven't started Xeloda and will probably not start till the end of August.My doctor was not able to see me for my last infusion of Herceptin and Perjeta.I am glad I didn't start yet since it impedes healing from radiation.During the last week and a half my chest has healed a great deal and besides tightness I have nice pain.I just got back from San Diego where I was visiting
My son and his wife.He is in the Navy.I traveled with my friend Pam who is my daughter in laws mother.I am going on a cruise August 17-26 and then I will get ready to go back to work-God willing.
0 -
Hello sylvia and all, Im going out with my camara. and I going to take picture of what i will see and send you.
Now Im in the hamaca looking my beautiful flower and the little birds.
0 -
I hope you can see the blue and green bird is a loro. Maybe you can make the picture more big
0 -
0 -
Hello I make a zoom.
0 -
Here is another bird
This is like a Eagle. but is more little
0 -
This one I never know the name
0 -
This is a picture from my "servicio medico" medical center. You can see part of the "coordillera occidental". the hight montain is call "pico de loro".
My house is behind the palms
0 -
Marias
Thank you for the beautiful pictures-it looks like paradise❤️!
Rhonda
0 -
Hello Rhonda,
Thank you for your post and for letting us know that you will probably not start Xeloda until the end of August. When will you see your doctor for your last treatment with Herceptin and Perjeta.
It was good to know that you are healing from your radiotherapy treatment.
Thank you for the lovely photographs, which are very clear to look at. You look very healthy and you all look like a happy family.
I hope you have a good cruise in August.
Fond thoughts.
Sylvia xxxx
0 -
Hello Marias,
Thank you for all the lovely photographs that you have posted. I enjoyed looking at them so much. That red flower is very beautiful and the birds are so exotic. I can imagine you walking and taking these photographs. Everything looks so exciting looking at them from Exmouth.
That bird with its blue and green colouring is exquisite. The other bird looks majestic and very proud and dignified.
Do you live very isolated or do you have close neighbours? How far is your home from the medical centre?
Take care and keep in touch.
Fond thoughts.
Sylvia xxxx
0 -
Hello Sylvia and all of you.
Well yesterday I didnt take the picture from my walking time, only in my balcony. I live in a residencial unit with 10 building, every one of 4 floors.
I live on the 4 floor so I can see the trees and the birds a lot. Here is this place are 21 residencial unit like my.
Behing is a river, beside is a big shopping center, in front is the university and the medical center.
Abrazos
Marias
0 -
Hello Sylvia, Rhonda, Pam and all of you. Yesterday I went to the appointment in radiology, they painted some small points in my right breast to start the radiotherapy near the 17 of August.
I like the trip that Pam did to the vineyard. I never know of any of the books that your are talking in your post. Only I read 1984 a lot time ago too.
Abrazos
Marias
0 -
thank you for such a positive post , i am in the uk and just had mx and anc and am tn ..Its scary to think there is no back up after treatment .I have a 12 yr old who already lost his dad so afraid he will lose me too.Always thought id be here to see him grow up x
0 -
Hello Maria12,
Thank you for your post and welcome to this thread, where we have a very good group of women. We shall try to help you all we can here and the first thing I want to say is you must have positive thoughts and keep looking forward.
I am very glad to know that you are from the UK, because way back in 2010 I started this thread to try to help women in the UK because I thought we were in the dark ages, especially for breast cancer with triple negative receptors. It has turned out to be a thread for women from all different countries.
It would be helpful if you could give us some more details about your diagnosis and treatment. From your post I can see that you have just had a mastectomy and I think ANC means you have had lymph nodes removed. Did you have any chemotherapy before your mastectomy? This is usually done if a tumour is large (6+ cm) to make surgery easier.
Have you been told what kind of breast cancer you have? The most common is invasive ductal carcinoma (IDC), which is used to describe cancer of no particular type.
On diagnosis and after fine needle aspiration (taking a blood sample), you will have a mammogram and ultrasound with a core biopsy. All this is done to prove that you definitely have breast cancer.
As for the receptors of the tumour, they are graded as ER+, PR+, HER2-, or ER-, PR-, HER2-. These three minuses equal triple negative. 10% to 20% of women have triple negative. You should have been told the size of your tumour, the stage, and the grade. Most, but not all women, with TNBC, have grade 3. but some have grade 2. The stage is based on the size of the tumour (stage 1 to 4). Stage 4 means it has spread to other parts of the body.
What is the next step in treatment for you? If you started with surgery you will probably have chemotherapy and then radiotherapy.
We are all here to show you that you can get through this and we can help you to get through with information, tips and support.
You must not be afraid of the fact that after standard treatment for TNBC, there is no further treatment as there is for hormonal breast cancer. The hormonal drugs that women take have nasty side effects and you have to take them for ten years, with no guarantees of success. I have always been positive about being TNBC and glad that I did not have to take any of these drugs. I had a large tumour, chemotherapy etc., and you can see these details in my profile. I am now over twelve years since I was diagnosed.
You must be there for your twelve year old son and he should be a motivating factor in your survival. You must tell yourself that you will be around to see him grow up.
Please let us know how we can help you. We have a group of very caring women on this thread.
Thinking of you and hoping to hear from you.
Best wishes.
Sylvia xxxx
0 -
Hello Marias,
Thank you for your post and that information. It all sounds very nice where you live.
Thank you for your PM and I shall look up the information tomorrow when I have more time.
Sending you fond thoughts.
Sylvia xxxx
0 -
Hello Mary,
I am missing you on the thread. I hope you are alright.
Love.
Sylvia xxxx
0
