Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Vastim52,
On behalf of all of us I would like to say I am glad you have found our thread and we shall all give you the support that you need.
I was glad to read that you have nearly completed your treatment and you are to be congratulated on that. You must now try to relax and rest as much as you need as you look forward with optimism. I think we all have strange feelings when our treatment comes to an end. We enter a different phase. Going through treatment is a very busy time and when it ends there is a feeling of emptiness. You will adjust to this and settle into the next stage of trying to live as normally as possible in between going for regular check ups, when we all get a bit nervous and jittery.
I think we can all understand this worrying about recurrence. We all have it and somehow we learn to live with it.
I read your profile very carefully and I saw that this is your second cancer journey. It must have been a terrible shock to have the breast cancer come back after twenty-five years. You got through it all then and you have got through it again. Did you have just a lumpectomy the first time around?
You were very young the first time you were diagnosed. Obviously you got back to normal living, and you will do that again.
Back in 2005 when I was diagnosed, I also had a large tumour, 6+cms and I had chemotherapy before surgery, a mastectomy of the right breast, and radiotherapy. I had ten years of regular check ups at the hospital, no scans just physical check ups and mammograms. I am eleven years out since diagnosis and have been fine, I have learned to live normally most of the time, although I take nothing for granted. I have recently got to know someone whose cancer has come back after fourteen years and has spread, so she is going through chemotherapy, orally. I think that has brought back to me even stronger feelings that you can never take anything for granted, but you have to continue on normally.
On this thread, we are a small friendly group and our therapy is to discuss all sorts of things that define us as so much more than cancer survivors.
We hope you will stay with us and tell us all about your life, your interests and absolutely anything that will help you.
Sending you fond thoughts.
Sylvia xxxx
0 -
Hello Michael,
Thank you for your post and for link 22, which I shall look at today.
You are probably right about activity moving away from these discussion groups and onto Facebook. Like you, I have never really used Facebook, but I know it is a way of life for so many people. This social media site seems to be like an on line daily diary of the lives of millions of people. It does not seem to be in depth. Twitter seems to be more in depth and more about comments on world events. It also seems to be dangerous comments made anonymously. Last night I was watching a programme on Channel 5 about the after effects of Brexit and twitter comments were coming on the screen all the time. What do you think of Twitter? I have not been tempted to join. Sometimes I think I would like to start a blog but then I think of all the possible aggravation that could arise and even nasty threats!!!
It is a pity if people are moving away from these discussion groups. I think we are probably more serious and more informed. Who moderates on Facebook to make sure that cancer information is factual? Over the years I know that some women on these threads went to Facebook and some invited me to join them, but I felt I did not want to.
I am so sorry that your world wide lymphoma group does not have many posts now. That is a real pity.
We are living strange times in the UK today. I am wondering where the Labour Party is going. What do you think of Angela Eagle and Owen Smith? I feel that Labour is destroying itself. As for the way Theresa May has become Prime Minister, I think it is undemocratic and unacceptable. We need a general election. I still respect Jeremy Corbyn and think the way he has been treated is terrible. He is a man of principle.
I hope you are keeping well. Would you please send some of your rain our way! The grass is turning brown here.
Do you ever watch Redacted Tonight on RT, Freeview 135? It is one of my favourite programmes.
Wishing you all the very best.
Sylvia.
0 -
Hi, Valstim
Glad you are reaching the end of treatment; I do remember the feeling of insecurity you are feeling now. I felt that as long as I was on treatment, I was fighting the cancer. When it was over, I felt like an open target. However, as time goes by, that will get better for you. I have found that when I am feeling well I feel very positive about things, on days when I am having a not-as-good, achy day the dark thoughts do come on. I think all we can do is try and do the best for ourselves, with good diet, some exercise, and try to have good times doing what we enjoy. You have done the hardest part, now we have the rest of our lives to live, best wishes, talk to you soon, I hope!
Mary
0 -
Hello Michael,
I just wanted to let you know that I have read through link 22 and found all the information about these new drugs most interesting. There seems to be no shortage of trials with new drugs but of course they all have nasty side effects. It would be interesting to hear from people on some of these trials. I wonder how expensive these drugs are, when they will become available and just how much survival time they give. I still think much more attention should be given to prevention.
I have been reading through some posts on the other threads and am sometimes amazed at how much information some of the American women are being given, especially through pathology reports. I wonder how much women are being given here in the UK. I recently read one post in which a woman said she had been told she was 100% p53. I know there is a connection between the p53 gene and TNBC and about it being switched off through a methylation process, but what does all this mean?
In another post, a woman said she had been told she had the faulty gene, BRCA1 I suppose, and she was 65. When I was diagnosed at 63 and enquired about genetic testing, even had an appointment with a genetic nurse, who told me I did not need the testing because I would not have the genetic faulty gene at 63.
We have been having a heatwave here but it has not been very pleasant. I would say that Exmouth is desperate for rain now.
What do you think of Owen Smith? He has been described as Blairite Light. I do not like the fact that he has worked in the past for two pharmaceutical companies, one of which was Pfizer and earned £80,000 a year. He is also said to have made a statement in 2005 about believing in private involvement in the NHS. I shall not be voting for him for leader, but am glad that Angela Eagle is no longer in the running.
How are things going in Northern Ireland?
Best wishes
Sylvia
0 -
Hey, Sylvia and all,
I did find the article by Sarah Boseley in Guardian, I don't completely believe it either, that stress is not part of cancer cause. And stress is probably not a cause by itself. I still think it is a part of the whole picture when it comes to BC. I read another article there about gene-mapping and more individualized treatment of cancer. I don't know how soon all this is going to become widely utilized, it is true there seems to be more activity on it here rather than UK. I did have the BRCA test, but only because I have a sister who was 50 at the time, and it could affect her. But that was as sophisticated as it got in my treatment course, and that was only 2 years ago. I think it is early days in all this, but if it works, that is great. I have also read on some of the other threads about the p53 etc. and honestly didn't know what it meant. I don't even know how these things are tested, do they sample the tumor or take blood tests? I did see the article about women in UK not getting the proper tests to check for secondary tumors. As you said, the lack of attention to this is appalling.
The political world is up in the air, here too. We have the Republican Presidential Convention going on. in Ohio. Our latest outrages have been the cop-killings going on. They have been ambushed and assassinated. The powers-that-be seem to be lacking in the appropriate amount of outrage, it's so frustrating.
In this hurly-burly world however, your flowers are beautiful, just gorgeous! We have been so hot here, in the high 90sF, will be 100F this weekend. That is with humidity, it's just miserable. My flowers all look quite tired and overbaked. This morning I got up at 5 AM and did some stuff outside while still cool, after that I am hiding when I get home!
To you and Michael, I wanted to say that I do go on Facebook, I check in there sometimes mostly to see pictures of relatives' kids who live out of town. But the messages are very brief, not many people go into depth on things. Sometimes people post very negative things, for the most part it's people posting pictures, articles, recipes and other people saying whether or not they like what has been posted. I don't know anything about Twitter, but I do text on my phone. And yes, I find my spelling is quite different on my phone than when I am actually typing. I don't think spelling is thought very important anymore, since anyone can use spellcheck on their computer. I was always an excellent speller and took pride in it. That's old school!
I had better go for now, I have an appointment.
Talk soon, Mary
0 -
Hello Mary,
Thank you for your post. You always put in such a tremendous effort to write an interesting post.
I agree about the stress. I think it plays a major part in all of our illnesses. It upsets the natural balance of the body.
As for all the information about genes, I am not that convinced. I was reading recently about all the thousands of genes that play a part in diabetes and how it is hoped the research will bring about individualised treatment. All I can see in all of this is more drugs and more money for the drug companies. Did you know that the man who wrote the book Cancer, the Emperor of all Maladies, has written a book entitled The Gene: An Intimate History. I do not think I am in the mood to read it.
I think that if you want to find out about what is going on with your genes, you have to get a genetic testing.
I am so glad that I have not had to take any medication since I finished standard treatment. At least I know I am not upsetting my body with toxic poison. I have two people living here that have had breast cancer treatment, both hormonal, and I can see what the post treatment drugs are doing to them.
I have been following some of the Republican Presidential Convention in Ohio and I do admire the outspokenness of some of the speakers. Here in the UK speakers are weak on the whole and too rehearsed. Our Parliament in Westminster needs to get its feet in the modern age. All the ceremonial stuff is ridiculous.
We are now into the leadership fight in the Labour Party. I cannot see anything wrong with the present leader, elected a huge mandate last September. I shall be voting for him again.
I think the world has gone mad.
That is all for now. I am going to try to read yesterday's newspaper.
Wishing you all the very best.
Sylvia xxxx
0 -
Hello All
Thanks so much for the warm welcome. Politics here in the states is almost comical which really worries me, because this is serious business.
I'm #20/33 rads and my skin now says WHY???.
Sending good weekend thoughts to all.
0 -
Hello Valstim52
Thank you for your post.
Keep looking forward with your radiotherapy. You will soon be finished.
I hope you are not having too many problems with your skin. Back in 2006 when I was having radiotherapy I was told to use a brand soap called Simple and not to use my usual Dove unscented soap because it had metal in it. A good alternative to soap is to use aqueous cream. Some women used Aloe Vera cream for gentle moisturising. A lot of women say they found radiotherapy easier than chemotherapy, but nevertheless they are both challenging and cause fatigue. Just take it easy and keep out of the sun.
You will have noticed on the thread that we have interesting discussions about anything we like. It is a good form of therapy to take minds off breast cancer treatment. It is all mind consuming in the early days, but it does get better as time goes on.
It is hard what to make of politics these days, both in the US and the UK. As you say, the situations sometimes seem comical, but politics is a serious business and we all have to think carefully about how we vote. I have been following the Republican Presidential Conference with great interest and I do like the outspokenness of the speakers, whether I agree with them or not. In the UK we are in a muddle and have a Prime Minister who has not been elected. She should call an election.
Tell us a bit about life in North Carolina.
Fond thoughts.
Sylvia xxxx
0 -
Hello everyone,
I am just popping in to wish the group and all those viewing a good weekend. Please do not forget us during the summer months when you are out enjoying the sunshine. Make sure you stock up on that important vitamin D. The latest news in the UK is that we should all be taking vitamin D during autumn and winter because of the lack of sunshine.
I have been catching up on all of the threads relating to TNBC and I remain concerned about the number of women being diagnosed. I was surprised to find that there were about twenty new threads created through July. While I was reading I noticed that some patients were having just carboplatin and taxol, and others were having doxorubicin and cyclophosphomide and no taxane for their chemotherapy. It would be interesting to hear from anyone going through chemotherapy with these regimens and to know if there was any special reason.
I think we should be careful not to frighten newly diagnosed patients with TNBC. We have to remember that our treatment experiences are varied and individual and they may not be another person's experiences. Some of us get through chemotherapy fairly easily and others have nasty experiences. It is the same for radiotherapy. New patients need to be reassured and told that the cancer treatment journey can be done and that there is life at the other end. My motto has always been 'be positive about negative'.
It is always interesting for motivation to click on Survivor's stories around the world. Mine is there as is Hanieh's and Maryna8's. If any of you have written your story there, please let us know so that we can read them.
Wishing everyone the very best.
Sylvia
0 -
Hi Sylvia and all
Today was the second anniversary of my lumpectomy. I never forget that special day. My parents were just recovering from all the anxiety of my father's colon cancer and were celebrating the end of all his treatment that I was diagnosed with breast cancer. I didn't dare to tell them to see their suffering again. So at first I didn't tell them anything. My husband and I went to the hospital and asked my mother in law to come to our house to take care of our daughter. I can never forget how anxious my little daughter was and how, as she told me later, she didn't sleep a wink during the night I was at the hospital. Before the operation my brother came to the hospital to give me some emotional support. I went for surgery with complete uncertainty. I was going to have sentinel lymph biopsy during the operation to see whether my lymph were involved and also the boost radiation during surgery. Yet , I was so calm that my surgeon and all the doctors and nurses were somehow surprised. I was all the time praying deep in my heart.
When I opened my eyes after the surgery, I saw the happy faces of my husband, my brother and his wife. My surgeon had been satisfied with my surgery and had told them on the condition of being hormone positive I may not need chemotherapy. Yet , after the lab results and knowing that I was TN my doctors insisted on chemotherapy. The hardest part was to tell my parents as I was going to lose my hair and I couldn't hide it. My parents were in North. We went there and tried to tell them in a way that wouldn't make them too anxious. In fact I told them I had a mass in my breast and had to take some medication to avoid future malignancy. My mother understood what it was immediately but tried to keep calm in front of me. I knew what was going to happen to her later on. It really was a horrible experience. My younger sister, also , was pregnant and I had to care for her too.
The oncologist made me hopeful that by using cold caps I could avoid hair loss. But it didn't work for me and inspite of all the pain I suffered during the 8 -hour injections , I went bald in some parts of my head and the tragedy was that I didn't shave my head. Instead, one latenight , when everyone wad sleeping, I went to the shower and pulled out all the remaining hair strand by strand while looking at myself in the mirror. I sometimes can't understand what strength I had to stand those horrible days in my youth , the time when all my friends of my age were just thinking about the latest fashions.
Chemotherapy was really harsh on me especially because, except my husband, I had no one around to help me and I had to avoid telling my parents how sick I was as they were busy with my sister and the depression she had after delivering her baby. Being active my whole life, the worst thing during the treatment was not being able to live my normal life.
Now after 2 years everything is getting better and I hope to see many more years with my loved ones. In fact, sometimes I think I have been able to feel the joys of life more than before and have experienced much more success. I still have my anxieties with every ache and pain yet try not to let them interfere with my life.
Sylvia, thanks for being here and all your kindness and care.
Lots of love
Hanieh
0 -
Hello Hanieh,
It was so nice to see you back on the thread as I know you are very busy. You have written with such deep emotion about all that was going on in your family when you were diagnosed.
You are such a brave and caring person and wise beyond your years.
I was deeply moved about what you said and how you handled everything.
I am sure others will be moved by your post.
I have been reading a lot of the other posts within the TNBC threads and deeply concerned about the number of women being diagnosed with TNBC. I just feel there is something amiss with so many women being diagnosed. I feel the percentage of 10% to 20% of women being affected by breast cancer with negative receptors must be increasing.
I shall write more tomorrow.
Thinking of you and sending you all my love.
Sylvia xxxx
0 -
HI, Hanieh
So good to see you here again, I have been thinking about you. Thanks for sharing your deep feelings with us, about all that you went through. It must have been so hard to keep it all inside to protect your family. It sounds like you have truly come through to the other side since things are overall getting so much better.
I did not know, or maybe didn't remember, that your father had colon cancer about the same time. Life throws a lot at us at times, but we have to believe that we can find the strength to dig out of it.
I am so glad your other issues are getting better!
I am going to write another post about my latest diagnosis.
Talk to you soon,
Love, Mary
0 -
Hi, Sylvia, Hanieh, and all,
I think I mentioned that I went to my GP and told him I wanted to know what was wrong with my legs, why they were weak. I asked him what he would do if he were me. He ordered an MRI on my lumbar spine, which showed a slight worsening of my issues there. I have DDD (degenerative disc disease) and some stenosis, with a touch of scoliosis. The doc did not think my leg weakness was because of my back problems, although the back does cause me pain.
He also ordered an EMG, a test to study the nerve responses in my legs, since I have the neuropathy from the chemo. I got the results from that. I have Peripheral Neuropathy in my feet and hands, which I already knew. But I also have some sensory neuropathy, and some motor neuropathy. The peripheral neuropathy is what causes the tingling, aching in feet and hands. The motor and sensory neuropathy is what is causing the weakness. The good news is there is nothing wrong with my muscles, it is the little nerve connections that are not being made correctly. I asked if it could get better, he said it could. But I will add I am sure there are no guarantees. I am going to study up on supplements, and continue with the acupuncture. It's not easy to find classes on yoga around here, but I am going to do my best. I am also going to get into some kind of exercise routine, to keep the muscles that I have.
Our very hot weather continues, it is very humid today as well. I was outdoors for a while earlier, and it actually felt like I was breathing water! Hate to say it, but autumn is looking good!
I agree with you, there seem to be a lot of people posting with new cancers, don't know if there are more TN cancers or more people posting about it. I know in my personal life I know a lot of women who had or have breast cancer, but only 1 other with TNBC, and 1 woman with HER2+.
Talk to you soon,
Love, Mary
0 -
Hello all.
I have been following this threat without posting much, some questions here and there… but the more I read, the more I want to ask more questions and share my thoughts and concerns.
Maryna8 _ reading about your neuropathy made me want to ask more questions. Lately I have noticed that I had a persistent pain in my feet when walking or when stretching my toes... Some pain in my figures, bruise like pain when pressing on some fingers. I haven't had the same chemotherapy as yours so not sure this is related.
During chemotherapy and towards the end of it, I had pain on hips which resolved itself and don't feel anything there anymore, my MO thought it was side effect from Neulasta not chemotherapy.
How did you get to know you had Neuropathy and that it is related to chemotherapy?
Sylvia _ for me chemotherapy was two agents EC regimen but administered at higher dose and every 2 weeks rather than 3 weeks. My MO believed that we needed to tackle the cancer aggressively.
As far as my situation is concerned, I had big trouble healing after lumpectomy, actually still not completed healed. After my surgery I had a skin separation and an open wound got created, two months after surgery the wound didn't heal, there was healing progress but very slow. My radiotherapy was delayed over the safety period (2 months apparently) and had to start radiation while having an open wound. Radiated all the breast as per the protocol , the open wound got a little worse, the RO asked me to stop for 20 days before I start the boost radiation- Which I will start first week of August.
Valstim52 _ Same as you, recurrence is my nightmare.. at every single pain, fatigue I think of recurrence or metastasis. I try to think positively instead and to read about all the nice survivor stories, they give me hope.. But every evening when the day ends the girls are asleep I can't get my mind thinking about anything else.. I guess time will help, and also no need to think of a situation we don't know if it will happen or not!
0 -
Hello Hanieh,
I have been reading your post again and must say how well you handled everything that was going on with your family when you were diagnosed. It must have been awful to have that diagnosis when your parents were celebrating the end of your father's treatment for colon cancer. I do hope he has continued to stay well.
I can understand the anxiety of your young daughter when she saw you and your husband going off to the hospital. I do hope she has got through that anxiety and is not having any kind of anxiety now. It must be terrible for children knowing that their parents are ill with cancer, and yet children can often be very strong and resilient at such times.
It is strange how we patients can be calm and quiet when faced with such a diagnosis. When I went to see my GP about the lump in my right breast, I knew within me that I had breast cancer, and when she examined me and told me that I had, I was not surprised and did not say much. It was when I saw the breast cancer consultant surgeon and she examined me and then did a fine needle aspiration, that I started to feel anxious. She told me she was certain that I had breast cancer but that she had to prove it. She made an appointment for me to see her the next day at her clinic. That day was probably the worst day of all my treatment. She put a trainee nurse with me to track me throughout the day and I went through a mammogram, an ultrasound, and a biopsy. I developed a splitting headache and was very weepy. After all that I went back to the breast cancer consultant and she told me that I definitely had breast cancer. She made an appointment for me to come back to see her the following week and I went straight to the bookshop to get some information about breast cancer. That evening I cried until I thought I could cry no more, but after that I was very calm and just decided to read as much as I could so that I was ready for next appointment with the consultant. The book that I read at the time, The Cancer Directory, gave me all the information that I needed at that time in 2005. I made notes and sent a letter to my breast cancer consultant with all the questions I wanted her to answer at my next appointment. I shall write more about that next time.
Like you, I did not tell anyone, except Raymond of course, who was with me all the time, about the fact that I had breast cancer. I did not tell any of my neighbours, friends or family. Some I told sometime later, but some I did not tell until I had finished treatment. It is strange how we all react to these things.
I was interested to read about the cold cap that you used and was sorry to hear that it did not work for you.
I do hope you have now managed to put all this behind you. I know we all have ups and downs post-treatment, but you have done really well.
Thank you for your kind words. I am only too glad to have been able to help. It was quite by chance that I saw your name on another thread and just had a feeling that I could help you.
It has been so interesting learning about you and your country.
Sending all my love.
Sylvia xxxx
0 -
Hello Mary,
Thank you for your post. I do have to give you full marks for persistence with your GP.
I do hope you will get some kind of improvement as time goes by.
Let me know if you find any kind of supplements that help. From what I have read and heard about acupuncture, I think you are right to continue. I do read and hear good things about yoga as well. Have you tried any kind of therapy on your feet or hands? I understand that reflexology is very good. I continue with regular visits to the podiatrist every eight weeks and I must admit that I always feel better after these visits. I am thinking of asking her to test my feet again next visit to see if they are still completely numb. I suppose they will be. It was, as you know, a podiatrist who diagnosed first of all the neuropathy in my feet by prodding them with needles while I had my eyes closed. I did not feel anything. This peripheral neuropathy was confirmed by my GP and then my oncologist, who said it was the docetaxel (Taxotere) that had caused it. I suppose it is the same for paclitaxel (Taxol). I would not be surprised to learn that other chemotherapy drugs also cause it. They are all toxic.
I could not survive your extreme heat and yet way back when, when I was teaching in the south of Morocco, it was 45C in the shade, but it was a dry heat. It is not so hot now in Exmouth but we badly need some rain.
That is all for now. Lots of love.
Sylvia xxxx
0 -
Hello4everStrong,
It was nice to hear from you and to know that you have been following the thread. It is not often that we hear from someone in France and it is helpful to hear from as many countries as we can.
With reference to peripheral neuropathy, you might want to ask your oncologist whether epirubicin (Ellence) and cyclophosphomide (Cytoxan) can cause neuropathy in the hands and/or feet. All these chemotherapy drugs are so toxic that I think they can cause almost anything. There is something known as hands and feet syndrome. You might want to ask about this. I know that all these years on since I was diagnosed, the palms of my hands can suddenly go deep red. When I was having epirubicin and cyclophosphomide my face used to flush red and it had never done that before.
I was wondering if there was any reason why you did not have one of the taxane drugs, docetaxel or paclitaxel. They are supposed to be very effective in the treatment of breast cancer with triple negative receptors.
I have read that Neulasta which is often given after each chemotherapy treatment, can cause a lot of pain. I was not given it but a lot of women seem to have it.
I was interested to know that you had EC every two weeks, I had it every three weeks for the first three months and then I had three months of docetaxel (Taxotere) on its own. I had all this chemotherapy before surgery.
If you want to get tested for neuropathy, I would think you could just get it done by a podiatrist as I did.
I was sorry to read that you had such trouble after a lumpectomy. I do hope all will go well when you start radiotherapy in August.
Keep in touch with us so that we can help you through.
I think we all worry about recurrence or metastasis. It is part and parcel of being a cancer survivor. It does get better as time goes on, but it never completely goes away. I am over eleven years since diagnosis, and most of the time I do not worry too much about the cancer coming back, but I do not take anything for granted. This came home to me recently when I met someone whose cancer had come back and metastasised after fifteen years. Her breast cancer was hormonal, but not HER2+. All that started to make me feel more anxious again, even though I am TNBC.
Tell us a bit more about yourself and your life in France. We are all good friends here and believe discussing things other than breast cancer is great therapy.
Wishing you all the best.
Fond thoughts.
Sylvia xxxx
0 -
Hello Kathseward,
I was so glad that I was able to help a little. It is perfectly normal to feel afraid when you are first diagnosed, but this will get better as time goes by.
Once you get started on your chemotherapy treatment, you will be kept busy and you will get through the treatment. Why not come over and join the thread I started, Calling all triple negative breast cancer patients in the UK (we have women from all over the world), that has been going since September 2010. We shall be able to support you through your treatment. It would be helpful if you could let us know what chemotherapy drugs you are having. I am assuming you are having these before surgery. It would also be helpful if you could post the details of your diagnosis beneath your post (in your profile).
It is usual to put what kind of breast cancer you have, the size of the tumour, the stage, the grade and the receptor status.
I got through the fear by being informed, having one good cry, eventually accepting the breast cancer diagnosis and just getting on as calmly as I could with the treatment. You can do this.
Fond thoughts.
Sylvia xxxx
0 -
Hello lilyp6
Thank you for posting a reply and I am so glad that my story has been able to encourage you. That is what the forum is all about. I want to reassure, motivate, comfort and support all those who find themselves on these threads having been diagnosed with breast cancer.
I do hope all will go well with the rest of your chemotherapy and am most interested in the fact that you are having carboplatin every three weeks to complement the Taxol that you have most weeks.
It would be nice to have you on the thread I started in September 2010 that is for everyone, although I started it to bring everything out of the dark ages with TNBC. It is Calling all triple negative breast cancer patients in the UK. You are most welcome to join.
Wishing you all the very best on your chemotherapy journey. Take it easy while you are doing this.
Fond thoughts.
Sylvia xxxx
0 -
Hello everyone,
I hope you will post to help and support Kathseward and lilyp6, who are going through treatment. We need those of us with experience and tips to help newcomers. We all know what it is like to go on this cancer journey, how we need support on the way and encouragement that we are going to come out the other end.
Best wishes to you all and I hope you had a good weekend.
Sylvia xxxx
0 -
Hi Sylvia
Thanks for your warm welcome and I look forward to know more of you all and use each other as support throughout this time.
I have an appointment with MO next Friday will ask him about the pain I am having, the pain is only present when I move my feet and press on my fingers.. Thanks for the tips, will check in my area if I can find a podiatrist.
I am also preparing a list of question which I want my MO to answer to. Below are some studies I have been reading which will want him to comment on and see how my situation relates to these.
New Compound - UM-164 - Shows Potential for Triple-Negative Breast Cancer (university of Michigan)
June 2016
Triple-negative breast cancer target is found- GSTP1 (university of California)
MAY 2016
http://news.berkeley.edu/2016/05/12/triple-negative-breast-cancer-target-is-found/
Higher locoregional recurrence rate for triple-negative breast cancer following neoadjuvant chemotherapy, surgery and radiotherapy
July 2015
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4519490/
Beta-Blocker Use Is Associated With Improved Relapse-Free Survival in Patients With Triple-Negative Breast Cancer
JULY 2011
http://jco.ascopubs.org/content/29/19/2645.full.pdf+html
Also I will ask my MO about any interesting clinical trial that I might benefit from. I am having a blood work a day before my visit and will be reviewing with him my ca 13-5 tumor marker, vitamin D Cholesterol plus many other things.. Cross fingers they will be in the norm range.
I have no idea why Taxane wasn't given to me, but I remember asking him about platinum chemo and he said that the EC gave good results, and that we could play with dosage to get it working more aggressively.
France is an unprecedented situation, with all the terrors we have been living. People are still going out and living normal lives but there is a sense of insecurity, which I hope will get restored.
0 -
Hello 4everstrong,
First I want to say I am sorry you find yourself in need of this place, as we all are! It's a good place to be if you need it, however. The cancer diagnosis is devastating for all of us, but even more when so young as you are. I was 61 when diagnosed 2 years ago, when I read up on TNBC the website said, Usually occurs in young women, and women of Asian or African-American ancestry. I missed on both counts, just lucky I guess. We do wonder what is the reason so many young women seem to be getting this disease?
I am puzzled by your symptoms, chemo-induced neuropathy is usually caused by the taxanes, for one thing. I had Taxotere. I also had the 2 drugs you were given, one of them was called Adriamycin instead of Ellence but I believe it is the same thing. The drugs you were given do not usually cause neuropathy. Did you have any arthritis before chemo? I did have some osteoarthritis before chemo, and it seemed to get worse, especially for the first few months after chemo. My neuropathy started with the first dose of chemo I had, after I started feeling somewhat normal, my feet swelled up and tingled like crazy just for one day. The second time I had Taxotere it was worse, and after I told my MO, he shrank the dose and it still did the damage to the nerves. I even got the cold gloves for the feet, but I do believe the damage was done with the first dose before I had the foot gloves.
I hope your issue is not neuropathy, but something that will pass away with time. I think I am stuck with this. When it was only my feet and hands, it was okay, I could handle it. This leg weakness really is limiting, and showed up later. I knew it was neuropathy because that is a common side-effect of Taxotere, I believe 40% of patients who use that drug get neuropathy to some degree. I was tested for it it after treatment with an EMG by a Doctor of Physical Medicine and Rehab, I was retested last week . It is now in my legs as well. And it is very possible your hip pain was from the Neulasta. I had a similar drug after every chemo session and they told me a side effect was leg pain.
To sum up: I think you were probably not told about neuropathy because the drugs you were given do not usually cause that.
I am sorry about the problem with your surgery site, I hope your healing is going well while you are not doing radiation. Good luck when that starts again in August! Come back here when you can, we will try to help out in any way.
Talk to you soon, Mary
0 -
Hi Slyvia
Im still very confused about it all. A routine mamm 3 weeks ago picked up an 10mm lesion deep in the breast that was non palpable.(last mam 12 months ago clear) They did a core biopsy and said it was cancerous so they removed it two weeks ago. Surrounding DCIS 10mm so 20 in total . Margins well clear MRI of chest and abdo clear and CT liver and abdo clear. Sentinel node biopsy done which was negative but they took 2 nodes . Nottingham grade 2 (7 out of 9) KI-67 10% Chemo starts on 4th August and Im still really confused about what it all means. The oncologist said I had a 90 % chance of non reoccurrence which I should be happy about but of course I then started with Dr google. Feeling very scared and very vulnerable right now
0 -
Hello 4everStrong,
I do hope all will go well when you start your radiotherapy again in August.
Thank you for posting all those links and I shall try to go through them during this week. I can see that you have been doing a lot of research.
I think it is always good to go armed with questions for your oncologist and to participate fully in your treatment, because it is your body.
I have been following all the news about the terrorist attacks in France. It is truly awful and I can understand that people have to try to carry on as normally as possible, but it will be with great nervousness. I am also following the news about Germany. I think it is only a question of time before something happens here in the UK.
I have a great interest in France because I lived there for six years and also lived in Morocco for three years working for the French Ministry of Education. They had a military coup while I was working there.
Fond thoughts.
Sylvia xxxx
0 -
Hello Kathseward,
I wanted to wish you well for August 4th when you start chemotherapy.
There is really nothing to be frightened about. Chemotherapy is very doable and all in this group can attest to that. Have you had a pre-chemo interview? The side effects are very individual, but tiredness is the most common. Make sure you drink plenty of water, get plenty of rest and keep looking forward to the day when the chemo ends. Let us know the drugs you are having and when you get started on them how they are affecting you.
Sending you fond thoughts.
Sylvia xxxx
0 -
Hi Kathseward,
Knowing we have cancer is a frightening and something we struggle to believe and accept- Especially when it doesn't run in the family.
Anyways, this is to say that we will always wonder why us and why TNBC and why now and all those sort of questions.. I have to say that those questions are genuine but impossible to answer – my advice is to focus this energy in trying to ask ourselves other questions that we could find some type of answers to.. what would be my best possible treatment, taking all what we have available: surgery, chemo, rads, diet? Exercise? Less stress? More pleasurable time? Asking questions to maximize our chances of winning this ..
It is too late, we have cancer now, as far as I am concerned I had to accept this to be able to move on.
Please keep writing your concerns and expressing your fears .. Don't let it all in.. in here we can talk about it over and over .. but help yourself in finding positive thinking every now and then.. your body needs your brain to be more positive.. you need to trick your brain to get more happy hormones into your body rather than the stress ones. Of course it is difficult to do it 24/7 but lets drop this anxiety to as low as we can!!
Good luck to all of us!
0 -
Hi Mary.
I appreciated your nice words and thank you for taking the time in answering to my questions.. I doubted it was Neuropathy, but had to ask. I will find out sooner or later what it is.
There are many things we don't understand about TNBC or other cancers. I hope the aggressive treatment we undertook will be doing us good and keeping us safe.
Good o see that you are already almost 2 years out… this Nov will be one year for me.. and so I will start counting ! J
What is/was your follow up plan? Every 3 months or 2 months the first year? And 6 months the 2nd year?
0 -
Hello Sylvia
I am sure the rads will go well and I am ready for it, whether it will be easy or not! The only hope I have is for it to be effective and does the job it supposed to be doing!
You are right, I have done a lot of research, a lot of reading. This is due to my nature – problem solver!
I am also impressed with your travel - originally I am from Algeria (Morocco neighbor) educated in the UK and working and living in France. So some common points there!
a lot we can talk about in later posts..I do not wish for London to live what we are living in France, Germany or Belgium or any other country for that matter. I was in London the year the bus incident happened and I am honestly deeply affected by all these terrors, killing, and wars!
We have enough pain in our daily lives to add more to it, human, deliberate own making. What we are trying to do is to get back to our routine and not show that their terror worked on us, what they have done didn't work... however in France there are deep social issues that needs to get resolved not to fuel this type of act. Cross fingers things will get better and presidential election in 2017 will hopefully have a valve effect- where population can express their concerns with voting!
0 -
Hi Sylvia,
I was persistent with the GP because I wanted to know what was going on so I could quit wondering. At one point I was told neuropathy does not cause leg weakness, which didn't jibe with what I had read. Now that I know what is going on, I find it depressing but I guess I will get used to the idea as I have had to do with so much else.
I have done the reflexology, and I like it. I actually have another appointment with the lady on Aug. 10. When I made the appt. I realized it would be my husband's birthday. If he had lived he would be 66 that day. I miss him, over the weekend the heat was so intense I did not stir far from the house. I stayed busy, but it was so quiet and lonely. The weather should be a bit better this week, we had a storm last night and it has caused some problems outside I will have to deal with. We do not usually have such long hot summers, this one started to get hot in June. Weather is weather, though, not much we can do about it.
My GP recommended Vitamin B1 and B6, I do already take a B Complex, but I may need to boost my intake of those two. He also suggested going to the local (half-hour away) Health Food Store and checking out their recommended items.
Did you ever have an EMG? It is the test they use to check for the presence and degree of the different forms of neuropathy. I get the feeling that we over here have access to more diagnostic tests than in the UK.
4everstrong has posted a lot of reading material, that is good to see and to have another voice here.
Talk to you soon, my friend
Mary
0 -
Hey 4everstrong,
I am actually almost 2 1/2 years past diagnosis, hard to believe for me, it all seems a blur. My husband was very ill when I was diagnosed, we were ill together and then he passed away in February 2015. It was a very dark time. Now I am trying to deal with all that plus new physical issues! I am with you, let's hope this aggressive treatment did its' job and we can just deal with our other problems!
I think that is right about the follow-up visits, every 3 months there was a check-up the first year, and after that every 6 months. My check-ups are very cursory. I lay on the table and she feels for lumps. She asks how I feel, if I have a strange pain she decides whether or not it's something to worry about, and that's about it. Once a year she will order a full blood test. I have learned that she is not interested in anything that's not cancer, my other issues she passes off to other docs, or tells me to visit other docs. The oncologist I started with actually retired on my last day of chemo, so I came to my current doc with us not knowing each other at all. She is not a warm and fuzzy doctor, but I will stick with her for now. I have decided though, if I ever have a recurrence I am off to the nearest big city cancer specialty hospital. But hopefully I will never have to do that.
Talk again soon, Mary
0
