Calling all triple negative breast cancer patients in the UK
Comments
-
Hello rlk58 (Rhond),
Thank you for your PMs. As I said in my response, I prefer to post on the thread so that everyone can benefit. Thank you for giving more details. I think everyone is upset when they get a diagnosis of breast cancer, but we do recover from it, somehow get ourself together, put all the information together and then get on with treatment. Keep telling yourself you are going to be fine.
From the details you have given, you have all negative receptors, so you are triple negative. You have said that you are stage 3 and grade 2 and that your tumour is 6.5 cms. You have also said that there are possibly two nodes that are positive.
You have said that you will be having AC chemotherapy regimen. Have you been told that when you have finished AC you will have a taxane chemotherapy drug? There are two and they are docetaxel (Taxotere) or paclitaxel (Taxol). Most of the women going through chemotherapy treatment at the moment on the thread are having Taxol and some are also having carboplatin.
The dose of chemotherapy drug is worked out on your weight and height, so expect to have this done before you start treatment.
Some of the women are having chemotherapy every three weeks, some every two, and some weekly. From what I have read on the thread, women seem to find weekly treatments easier.
I do hope all will go well on Friday when you have various tests, PET scan, blood tests and echo. I am assuming that by echo you have what we call an ultrasound. There is nothing to be afraid of with all this. It is routine.
I do hope you will come and join us all so that we can help you. If you do not feel like it, just try to keep up with reading the thread.
I was wondering how old you are. We are told TNBC affects younger women more than older ones, but I have seen plenty of older ones going through the threads. If you are a younger woman, I was wondering whether you had been offered genetic testing for faulty BRCA1 and BRCA2 genes. This is also becoming fairly regular for younger women, especially if other family members have been affected with breast cancer. Even if you are older, you can request an appointment with a genetic nurse to see whether she thinks you should be having these tests.
This may seem a lot of information but it will all fit into place. Once you start your chemotherapy just concentrate on that.
Sending you fond thoughts.
Sylvia xxxx
0 -
Hello Hanieh,
It was so good to hear from you. I was glad to know that we both share a love of the Russian masterpieces in literature. It must be wonderful to have been walking through the historical streets of Saint Petersburg.
Thank you for all the photographs that you have just sent. I was interested to know that you had taken them by using an app on your cellphone by the name of Layout. They are all very interesting photographs and I can see that you and your husband are a very modern and close couple.
Thank you for your kind words and encouragement to the women on the thread who are going through treatment. They need these words.
Are you back home in Tehran now?
I am very interested in some of the differences in vocabulary in your posts. For instance, you talk about cellphone whereas in the UK we talk about a mobile phone. The latest generation of mobile phones is are called smartphones and everyone seems to be using them. It reminds me of when I was teaching in Morocco and the other teachers from the American Peace Corps were also teaching with me. The students used to tease one another about the differences in language and my classes would insist that English from the UK had to be preferred. Of course, it is all mixed up now and interchangeable.
Thinking of you and sending fond thoughts.
Sylvia xxxx
0 -
Hello Kath,
I hope you are feeling better today and hang on to the fact that you have just one more AC to go. When you go onto your Taxol I am hoping you will find it easier because you are having doses weekly and other women have found it less taxing doing this.
You are right to stay away from antidepressants. They have all kinds of side effects. Just take everything calmly and try to use your friends and family and of course us to get your through this. Willpower is also necessary and you must keep telling yourself that you are going to get through this. Your prognosis should be good with a small tumour and no nodes affected. Be strong, keep hydrated, rest and relax, keep away from stress and keep looking forward.
On the thread we are with you, Chris, Claudia and Pam, all of you going through chemotherapy. We must not forget Rhond, who is just embarking on all of this.
Take care.
Fond thoughts.
Sylvia xxxx
0 -
Hello lilyp6 (Pam),
We have not heard from you in a while and I am just posting to say that I hope everything is going well for you. How is the chemotherapy going and when is your next treatment?
Hello Valstim52 (Val),
How are things going with your recovery from your stroke and how are you feeling post-breast cancer treatment?
Hello 4everStrong over there in Paris, France,
How is life treating you? How are you feeling post-treatment?
Hello Foxylady in Yorkshire, England, UK,
I was wondering how things are going with you? Have you now finished treatment or are you still going through chemotherapy? I hope all is well. Let us know how you are.
Hello merscotland (Maggie),
I was wondering how you are and whether you had now finished your radiotherapy. How are you feeling post-treatment?
Hello nili,
How are you? Last time I heard from you, you were waiting for radiotherapy. If you are still viewing, please let us know how things are going.
Finally, best wishes to everyone.
Sylvia xxxx
0 -
Hey, Sylvia,
It is hard to imagine what will be going on in the world of medicine in 10 years, maybe we will just toss out body parts and insert new robotic parts, who knows? I read a headline yesterday about starting to do head transplants, wow.
I have a few very busy days coming up, we will see how my energy level holds up. I am still involved in a family business, more so since my husband's death. Though I don't physically work there, I am involved in decision making and meetings several times a year. That time is here again, and this time it is not only business meetings, but a mixture of business meetings and socializing. Two days of that and then Saturday I am invited to a wedding and a birthday party for my 4 year-old grand-nephew. It's also still quite hot here this week, one of these days we'll get our cool,crisp fall weather, I hope.
I sympathize with Raymond, I am also susceptible to all the pollen floating around in the air, the level is very high right now. I hate it, because I love to be outside doing things and now being outside just makes me feel worse after a while.
I will talk more about the The Cancer Survivor's Companion later, I have not been able to get very far in it yet. It has brought home to me that there are many people going through what I seem to be going through now. The people around me seem to have expectations that everything should be fine with me now, I should shake it off and move on. It's not that simple, but I don't really know how to say that to them without sounding like a whiner. The testimonials in the book tell me that many people who have survived their bout with cancer feel this way, it's a lonely feeling.
Tomorrow I start the second round of my antibiotics, I will have been off them five days.
I better stop for now, I have to get things together for my day.
Talk soon, love, Mary
0 -
HI, Hanieh,
Thanks for all the pics, everything is glowing and beautiful, really something. Hard to believe that the Hermitage was once a home for families, royal families, that is. It's so huge and ornate. Looks like you are having a fabulous time, and you are making all of us want to travel there.
I have to close for now,
Talk to you soon, love, Mary
0 -
thanks Slyvia
U are such a voice of reason and have such a calming influence. Think im
Just a bit agitated because im keen tonget on tonthcweekly cycles.
0 -
Hi, Claudia,
What a great idea with your wig party, looks like a good time and a great fund-raising effort! And also happy for you that you have such a nice, large circle of friends.
I think I told you before I did not have radiation after chemo, because of arm problems I was having. In my case I think it was my torn rotator cuff and the neuropathy/nerve damage causing extreme pain all over my body and including my rt. arm. The docs decided the benefit was perhaps not worth the risk of further pain. In hindsight, I don't know if that was the right decision, but it is the one I went with. Sometimes I wish I had done the treatment, so I would feel as if I had pursued all avenues.
I will write more later, have much to get done today.
Talk soon, glad to see you back, Mary
0 -
Amanda,
Just wanted to pop on and say hi, don't really have time to write any more, but will be back in a while. Glad to see you back! I agree with you about Hanieh's pics, they make me want to travel to Russia too. But I think I want to go when it's a bit warmer; however, when I think of Russia it's usually a snowy Russia! I guess that's why the wealthy would go to the Crimean Coast to thaw out during winter!
Talk to you soon, Mary
0 -
Hi Sylvia,
I was just diagnosed stage 3 triple negative with 2 involved lymph nodes showing on ultrasound.I am getting a PET scan on Friday and meeting with my surgeon.This is my first time posting so I don't have all of my info in yet.I am 57 years old and reading your posts along with others help me.I am starting chemotherapy next week.Two months A C followed by 2 months T.Worried about the Pet scan but I have no symptoms and physically feel good.
Rhonda
0 -
Hi Kathseward
It's really hard. All the treatments are hard both physically and mentally. The days me seem neverending during the chemo and radiation. But believe it or not, after 2 years you will hardly remember the details.
Love
Hanieh
0 -
Hi rlk58
I'm sorry you are here. Yet you can find lots of support here.
I pray deeply in my heart your pet scan comes with clear results.
Just try to stay positive.
Love
Hanieh
0 -
Hi Sylvia, Mary and all
Now I'm in the taxi back home from the airport. My trip was amazing and I got a lot of valuable experience during it. Nothing is more educational than seeing different people with different cultures , ideologies and styles of life. I went to several churches and felt very good in them. Although some may say Russians are cold and unfriendly, I found the people around me cool and nice. They were also really beautiful. I really enjoyed looking at their pretty faces.
Sylvia, one reason I'm planning on visiting an English speaking country is to improve my English. As I said before, I learnt English all by myself using books and CDs. I Know I should be a perpetual student if I want to be a good teacher. Our institute wad named Iran -America institute before the revolution and we had many English and American teachers here. If only that didn't happen and we had more interactions with the world.
Lots of love
Hanieh
0 -
Hi Mary and Amanda
If you want to travel to Russia, make sure to travel in July as it's the warmest. Also try to devote at least two days to visiting the Hermitage museum . We were in Moscow for 3 days and in Saint Peterborough for 4 days. We spent half a day in Hermitage. It was not enough. Even one week in Saint Peterborough is not enough.
0 -
Hi Sylvia,
I am 57 and will be 58 on Christmas.I believe it is Taxol and the echo is for my heart.Tomorrow will be a long day and I will post on my results.Thank you so much for your reply-it eases my mind.
Rhonda
0 -
Thank you Hanieh!
0 -
Hello Rhonda
Thank you for more details. It looks as though you are having the chemotherapy regimen that most of the women on the thread are having, AC + T.
I hope all goes well with the echo for your heart. I also had an echo before and after chemotherapy. These drugs are very toxic, so it is a good idea to have a record of the condition of your heart before and after treatment.
Try not to worry. There is a lot going on when you are first diagnosed but once you start chemotherapy you will be in a regular routine and can concentrate on getting through chemotherapy.
Sending you fond thoughts.
Sylvia xxxx
0 -
Hello Mary and Hanieh,
Thank you for your posts. I shall be answering during the weekend.
Hanieh, I hope you will be able to settle down after all your excitement!
Mary, I can see that you have a lot on at the moment.
Talk to you later.
Fond thoughts.
Sylvia xxxx
0 -
thank you Hanieh
U are such a sweetie! Try very hard to take each day at a time but still so scared. Hopefully when this last AC is out of the way I'll be better! It seems to take forever I'm so glad I have found this site and I'm stay well away from Google now. The women on it are amazing! U should visit Australia one day it is a very young but beautiful country!
Cheer Kat
0 -
nothing like a bush Barby to lift ur spirits when the outback is green after rain!
0 -
Hello Mary,
Thank you for your posts. I look forward to hearing from you when your very busy time comes to an end. I do hope you will not tire yourself out too much.
I have decided that all the information is getting too much and I have decided to unsubscribe from Chris Woollams newsletters. I think we just have to live the day and hope for the best. I do not expect to see much change in cancer treatment in my lifetime and still think the answer is prevention, which is very difficult in our industrialised society. This beautiful planet has been severely contaminated and compromised, a lot of it in the name of greed. All this warfare does not help.
Take care.
Love.
Sylvia xxxx
0 -
Hello Everyone,
It's Sunday morning in California, and things are looking good so far. My husband had the brilliant idea to go to a Drive-In last night, so we could see a movie from our car, keep me away from germs, for my comfort, and to get me out of the house. (I'm guessing there aren't too many of those in the UK, maybe in Australia?) The movie was fine, but the best thing was to get out in the world for awhile.
Sylvia, I got a lot of comfort from your concern and wishes about my treatment. There's nothing quite like someone who understands from experience. Understandably, folks don't have a clue about what chemo does to the body. I had Aloxi in addition (not instead, as I thought), to the Emend in my IV drip, as recommended by the oncologist's PA. That made a big difference in the nausea this time. I've been drinking ginger tea and other ginger drinks, and eating potatoes, which has helped. I'm not OK yet, and I'm still feeling weak, but overall, it's a vast improvement over the last treatment.
Mary, I'm wishing you some better days. I'm always learning how the body keeps it's own schedule. It feels well when it's good and ready, which never seems to be when I think it will. For me, it's hard to feel emotionally well when I have SE's or any kind of bodily feeling that reminds me that I'm not well.
Hanieh, We are so lucky that you kept us up to date with your beautiful pictures while you were traveling. The good days await, indeed.
I work at a university, and have had the pleasure of meeting many professors from Iran: one of my favorites grew up in Tehran. He is a long term cancer survivor, and has been a precious source of support for me. He was bald from chemo when I met him, and is thriving and cancer-free now.
Claudia, Kathy, Chris, and Rhond, There doesn't seem to be any terrible news from us today. We'll all be celebrating the end of our chemo soon. If all goes as planned, my last one will be on Nov 1.
Cheers, Pam
0 -
Hi Kathseward
I liked your picture. In fact we have a lot of such sceneries here and they can be really soothing.
I really love to take a trip to Australia one day as I have heard it's a great, beautiful country. I hope I get the chance one day to travel there. Nothing in the world is more enjoyable for me than travelling.
I hope I live long enough to visit all the places I love to see.
Lots of love
Hanieh
0 -
Hi lilyp6
I'm happy to hear that a man from my country as a university professor been a precious support to you. We,Persians, inspite of having a long history of civilisation are being humiliated because of our Politicians who are not really decent. When I hear that someone in someplace is making a good reputation of the Persians, I feel great. I'm not really positive that anything would change in my life time, but I hope our children and grandchildren have a better future.
One of my colleagues went to Germany to visit her daughter who studies there during my visit to Russia, and said how disrespectful they were behaved in controlling areas.
lily I hope you to be a source of inspiration for many many years as a great, thriving, cancerfree person to all who may face the same problem as we did.
Lots of love
Hanieh
0 -
Hi Sylvia,
My classes have started and it was the second day my daughter went to school. Here,the schools start at the beginning of Fall.
Again , my life is getting busy but I'm happy to be healthy to work hard and thrive. I'm thankful for each and every day and I hope to manage to put all cancer memories behind.
Lots of love
Hanieh
0 -
Hi Sylvia, and greetings to all here,
My small marathon of a weekend is over, I did not attend the wedding I was invited to, I made it to all the rest of it. Didn't do too badly, 2 days required being in a boat in the very hot sun, not pleasant for me but did not see how to gracefully get out of it. Anyway, made it through, and generally speaking it was a success, I think.
I am surprised to read that you are giving up on your countryman Chris Woollams' postings. I do understand that you are over-saturated with information that may or may not be of any interest or of any help. I feel the same way at times, it's as if we get all this information but what do we do with it? I can only take so many supplements and vitamins, something else is always coming along and it all becomes like a big racket taking advantage of our worries and fears. As far as the technological advances, it is interesting to read about but here in the real world it is not helping people to avoid getting cancer. We are still being diagnosed at alarming rates. I came across Woollams' latest post today, it is a lot of repeated information. The exception was about the overdiagnosis of prostate cancer. There again, what does one do with that information? If a trusted doctor tells you that treatment is necessary, the inclination and the fear of cancer will push one in that direction. I agree with you completely, prevention is the key. I will continue to look over his postings, if I come across them. If I see anything that I think may be of interest to you, I can post it, unless you would rather I wouldn't.
This week I have rather a slow week (good!). A couple of appointments, and then next weekend I am off to a neighboring state for my nephew's wedding. A plus is that we finally have some cooler weather, the hot sun is cooled off for this week anyway. The weekend after that comes another wedding for another nephew! This one requires only minimal travel, however. The week after that comes the symposium with Ty Bollinger and the doctors and experts who are appearing. Phew, I think October will go by quickly!
Be back with you soon,
Love, Mary
0 -
Hi, Hanieh,
Glad you had such a wonderful time in Russia, it looked like an amazing trip for you. Interesting that you say that the people were physically attractive, I have noticed that many of our "supermodels" seem to come from that part of the world!
Your English is very good, better than many Americans, I think it's safe to say! We use a lot of slang when speaking to each other, that would probably make it more difficult to converse.
Many years ago, probably 35-40 years ago when I was working as a waitress in a hotel restaurant, I worked with several Persian young men who were going to the local university. They were all very well-spoken and very nice and fit in with all of us young Americans very well. In the late 1970s I did not keep up with geo-political news very well so probably had not much of an understanding that there had been an Iranian revolution, but I had to leave my job for a while about then, and when I returned the Persian boys were all gone. And they did not return. I did understand that before that time there was an active student exchange program, which I suppose ended when revolution happened. I can certainly understand how you feel, we do get a very limited view of life in your country. I am so glad you have added your voice to this community and we have gotten to know you.
I'm glad you get to travel frequently, I enjoy it too. I seem unable to relax at home because of all the things that seem to constantly need doing, and when I am away I can relax and enjoy my surroundings so much better.
Talk to you again soon, Hanieh
Love, Mary
0 -
Hi, Kath
Hope you are having a good day today, getting on with things does seem to help our state of mind.
Wanted to tell you I looked up "bush barby" to be sure what it meant! Generally speaking, just getting out and cooking and enjoying friends, right? Like our barbecues. My husband and I used to have lots of those, he loved to cook ribs and chickens and invite people over. Glad you are enjoying that.
Would love to visit Australia someday, the very long flight-time is daunting but doable, I'm sure. Adagio, who posts here sometimes, is there now roaming around somewhere with her husband. I'm sure she will check in sometime.
Talk to you soon,
Mary
0 -
Hello Pam,
I was glad to know that things are not going too badly. I think it was a good idea to get out to a drive-in.
When we are going through treatment, especially chemotherapy, we can tend to become housebound, so anything that gets us out without exposing ourselves to germs too much os a good idea. We do not have drive-ins in the UK as far as I know, but I am familiar with them after living in Canada for many years.
I was so glad to know that I could help to give you a bit of comfort during your treatment, so thank you for your kind words. I was glad to know, too, that you are drinking ginger tea and other drinks. It is strange how potatoes seem to help, but they certainly do. I used to love mashed potatoes when going through treatment. A couple of ginger biscuits with your ginger tea can also help.
You will feel weak during chemotherapy, so you must not overdo things. This is a time to give yourself some tender loving care.
It is no use talking to others about how you feel and what chemotherapy etc. is doing to your body. Breast cancer will be very frightening to those around you and they will just want you to get through it, get on with your life and forget about it. We who have been through it know it does not work like that.
I was interested to know that you work at a university. What exactly do you do? I know that Hanieh will be so happy to read your kind words about a professor in the university who is a cancer survivor. Our politicians are always causing trouble around the world and paint nasty pictures of those countries they do not like, for one reason or another. We need a world of peace, not war.
Hang in there with your chemotherapy. November 1st is not that far away.
Fond thoughts.
Sylvia xxxx
0 -
Hello Hanieh,
Thank you for your post and for letting me know that you are now back home. I hope all goes well with your classes. You will be back into the routine of getting up for work and getting your daughter off to school. Here in the UK the schools are about a quarter of the way through the autumn term, which started on September 4th and there will be a half term break in late October and then straight on for the Christmas break. It is now dark at 7pm in the evening and the trees are starting to shed their leaves.
Keep in good spirits and be happy every day.
Love.
Sylvia xxxx
0
