Calling all triple negative breast cancer patients in the UK
Comments
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Hello bak94
Thank you for your post. Welcome to the club about being fed up with all the doom and gloom over triple negative. We should all ignore it. The article you re-posted was interesting, but I do not think we shall ever get clear cut answers about why tumours act in the way that they do. Judging by the article, it appears to be all to do with whether tumour cells have pericytes or not. Has your oncologist ever used that word? It was new to me. I think we can drive ourselves mad trying to get some sense out of it all. If I were you I would not worry about the ER status too much. One thing that has become clear to me in recent years is that tumours can be very much of a mixture. I was ER+ 0%, and PR+ 5%, but I was told 5% was negligible. Probably, if you had been seen by my consultant, I have to conclude that you would have been told that your 3% ER was negligible.It looks as though you and Christina both have a decision to make about whether to have the anti-hormonal medication or not. You will have to look at all the side effects and weigh them up.
For the moment, concentrate on getting your infection under control and preparing for radiotherapy. Do you know how many weeks you will be having?
Best wishes
Sylvia0 -
Hello BernieEllen
Thank you for your post. Thank you for letting us know how things are going. It looks as though you are now getting into the usual routine after standard treatment. I was checked every three months for a couple of years and then it went to every six months, once with the oncologist and once with the breast cancer consultant/surgeon or her clinical assistant. I have been having mammograms every two years. This year I have an appointment with the oncologist in April and then usually see my consultant's clinical assistant in October. In June it will be seven years since my diagnosis, but I hope I shall not be discharged from the hospital.We are all glad to know that your hair is growing well. I was surprised to know that it had come back snow white. My own hair came back darker at first, but then reverted to my original dark brown colour. It is not now as naturally wavy as it used to be, but is thick and healthy. My eyebrows are not as thick as they were and my eyelashes quite delicate.
Keep posting, Bernie, and write about anything you like. We need you to support others and post any information that you have.
Best wishes
Sylvia0 -
Hello mccrimmon324(Heather), Maria_Malta, Sam52 and Karen3,
I am just posting to say hello and to wish you all a very good week. If you want to post about anything you like, please do. We all care about one another.Best wishes
Sylvia0 -
Hello everyone
Since it is such an awful day in Exmouth, with cold wind and rain, I have decided to post the last batch of information from Y-me breast cancer support today. The link is:The headings are as follows:
Survivorship:
What is a Survivor?
I like the definition of this. It is "Cancer survivorship begins on the day of your diagnosis and continues for the rest of your life". It further says "It makes you a member of a community of over 12 million cancer survivors in the US alone, 2.5 million of whom are breast cancer survivors". This is a very interesting article for everybody.
Life after Treatment.
This will be of interest to those of you who have finished standard treatment. It deals with long term physical and mental concerns.
Follow up Care.
Fear of Recurrence.
Anxiety and Depression.
"Cancer is scary and stressful and all cancer patients experience some level of anxiety during and after their treatment".
Diet, Nutrition and Weight.
Body Image.
Fertility.
Sex and Intimacy.
Breast Cancer and the Workplace.
This is an important section for those of you working while going through treatment.
Long Term Health Issues.
Lymphedema.
Bone Health.
This was of particular interest to me because of my osteoporosis. "Breast cancer patients should be aware of the potential damage that drugs and hormonal treatments may do to their bones, and take steps to make sure they do not develop osteoporosis".
"Some cancer treatments also cause a loss of bone mass, either by pushing the body into menopause or by blocking the activity of oestrogen".
You probably know that aromatase inhibitors, such as Arimidex, effective for the treatment of breast cancer in post menopausal women, can cause bone loss.
There are tips in this article about maintaining strong bones.
Menopausal Symptoms.
Survivor Frequently Asked Questions.
Am I Going to Die?
What Will I Tell My Children?
What About My Hair?
Everyone should read this article. It is probably the thing that worries most women. It certainly worried me. I realised afterwards that I need not have worried. I loved my wig and had elegant turban-like hats at night. The funniest thing was a friend was talking to me and when asking how I was said "at least you have not lost your hair"!!
Am I Getting the Right Treatment?
This is an important article, because of the complexity of breast cancer and the individual nature of your treatment.
Getting Support.
Talking to Family and Friends.
Talking to Children.
This is interesting and is divided into sections, depending on the age of the children concerned.
Tips for Caregivers.
Maintaining Records and Plans.
The Breast Cancer Community.
"For many people, the experience of having gone through breast cancer treatment changes their lives and perspectives. Some breast cancer patients just want to finish their treatment and move on, while some want to take what they learned about themselves and about life and use the information to help others".
You may think all this seems like a lot of work to read, but it is not. I have read every page of the three sections that I have posted and found it very easy to read. I do hope you will find time to read these pages. It is easy to find the sections of particular interest to each individual. If you have been newly diagnosed, start with the sections that will deal with the treatment you are about to face. There is something for everyone in these pages.
That is all for now.
Best wishes
Sylvia0 -
Hello everyone again
I have just received the latest newsletter from the Better Bones blog. There is a lot about bisphosphonates, especially Fosamax. There are letters from various people. I strongly recommend that you read it. The link is:
http://www.betterbones.com/yourstories/leeanne-fosamaxwaswrong.aspx?
The title of one article is "My gut told me Fosamax was wrong".
There is also information about exercising for strong bones.
Best wishes
Sylvia
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Thanks for posting the information regarding the Y-me site, Sylvia. I will go on there tonight and check it out. I also need to learn how to post my photos!
I decided to stay in bed again today and work from home as I am still not feeling very well. My DH has a horrible cold with chest congestion, fever and chills. He was coughing so hard last night (in another bedroom) that I was afraid I was going to have to call a family member to take him to the ER because I didn't dare do it while my counts are so low. Thank you for the compliment, I believe I have more fear than courage at this point - but I am glad the trial was available to me locally. There are many trials with eribulin and hopefully some good information will be available from these trials in the next few years.
I was premenopausal at diagnosis so am supposed to go on tamoxifen for 2 years followed by 5 years of an AI. My periods ceased with the first chemo and have not returned.
I have a friend who is going to give me her textbooks as she has just completed the nursing program at the local community college at which I applied. This summer I will take my first class online, a life development psychology course. That should be interesting, and hopefully take my mind off breast cancer!
Bernie, I am glad you are all finished with treatment!
Bak94, I am with you on the side effects of the anti-hormonals, too - but hopefully they will be minimal for us both- (if you decide to take them). My sister has a very hard time with Fermara but she has almost completed her 5 years of it.
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Hi I was so pleased to find this discussion . I live in ireland and have only come across 1 other person with TNBC.
One of my main concerns is what kind of follow up there should be as there is no preventative treatment and what signs to look for incase of reoccurrence[without being too paranoid]
I go to a wonderful support centre and we are trying to put together the most common fears and questions that women in particular with breast cancer , have. It can be very difficult to get answers and I do understand that sometimes there are no definates.
I also have high cholestrol and have been on Lipitor for 4 years if that is relevant.
I have been lucky enough to attend a lovely psychologist who has helped me to deal with my fears and cope with the doom and gloom that seems to surround TNBC.
I am so looking forward to the spring and can see the tips of the bulbs peeping through, always a sign of hope.
I will read your suggested info and have only managed to go through a few pages of this discussion.
I don't feel so isolated and alone now.
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Hi linali, I also live in Ireland just outside Kilkenny. I'm on lipitor as well, mainly because i have dangerously high blood pressure (that runs in the family on both sides).
Let me know how you are doing.
Bernie
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Hello linali
I am so pleased that you have found our thread and I hope that we can help you.None of us chose to be here, but we have made a nice little group over the past sixteen months. It is quite difficult to meet other patients with TNBC and I did not find anyone when I was going through treatment. We do represent about 10 - 20% of breast cancer patients. Take your time reading the posts if you are starting from the beginning. I see that you were diagnosed with DCIS so your breast cancer was discovered very early on. A lot of us were diagnosed with IDC (invasive ductal carcinoma) which is the most common type of breast cancer. TNBC is often grade 3. I saw that you had no nodes involvement. Did you have surgery and radiotherapy? Did you have any chemotherapy? If you had surgery, what kind?
As far as follow up treatment goes, it is usual, at least in the UK, to have physical check ups every three months for the first two years, alternating with the consultant breast surgeon and the oncologist. After two years you usually go to physical check ups every six months, again alternating with the consultant breast surgeon and the oncologist. It is usual also to have mammograms every two years. Your medical team depend on you to get in touch if you feel there is anything wrong or abnormal. Scans are not usually given in the UK unless there appears to be something wrong.
We learn to get on as normally as we can, but often experience anxiety when our dates for check ups grow close.
I was glad to know that you go to a support centre and I would be most interested to know what information is coming out of your discussions about common fears and questions. You asked about what to look for as signs of a possible recurrence. My oncologist told me that the most common sign was the appearance of a rash. I had a mastectomy of my right breast and my oncologist told me that a rash along the line of the mastectomy scar would be a sign of recurrence. I think you have to learn to look at your breasts and to feel them and look for anything that seems abnormal. This is the difficult part of living after a breast cancer diagnosis. We are all aware of the possibility of recurrence or spread (metastases) but we learn to live with all this.
I am not aware of a connection between high cholesterol and breast cancer directly, but of course there appears to be a risk factor in being overweight and developing breast cancer. Is liptor one of the statins? Stains are supposed to be very successful in lowering cholesterol, but they have side effects. There has been talk lately about using statins in the treatment of cancer.
I was glad to know that you have a nice psychologist who has been helping you cope with your fears and the doom and gloom that seems to surround TNBC. What has she been doing to help you? If I were you, I would not worry about the TNBC receptor status that you have. Everyone whatever the status has their own particular concerns. You will find quite a lot of information about all of this as you read through all the pages of this thread. We have been very busy and covered so much between us.
We are a small and dedicated group of women, and I think we have all become close. I know that I respect and care about all the women that I have got to know since I started the thread. They are a wonderful group.
I am so glad that you do not feel so isolated and alone now. We are all here to help. You can post about anything you like. You have a fellow compatriot in BernieEllen. She is a lovely person, with a lot of spirit and a good sense of humour. She will be of great help to you.
Sending my warmest best wishes to you.
Sylvia0 -
Hello BernieEllen and christina1961
Thank you for your posts. I have been very busy today and am quite tired, so I shall post to you tomorrow as I like to put a lot of thought in everything I write.I hope the week is treating you well.
Sylvia0 -
Hello christina1961
I do hope that you will find the information on Y-me useful and interesting. I found it to be one of the best outlines of going through cancer treatment that I have come across. As I have said, I printed it all out and read it from start to finish. The headlines of each piece of information are useful, as you can pick out the bits that are relevant to your own particular stage of treatment.It is my husband who is the real computer expert and he showed me how to post the photographs.
I am glad that you decided to get more bed rest, as I am convinced that it works miracles for the immune system. It should also help to relax the brain if you can switch off and sleep. When I went through chemotherapy I had three things that I did all the time, one was to get plenty of rest and sleep, the second was to drink plenty of water, and the third was to keep looking forward with a strong mind. I also made sure that I followed the instruction about flushing out my system in the first days following the chemotherapy and also to take the tablets given for the first few days which were mainly to avoid nausea. After that I took nothing at all, until I had the next chemotherapy session, which I had every three weeks. I feel that taking as little medication as possible with chemotherapy is a good thing. I did not have Neulasta shots and had never heard of them until I started reading this forum long after I had finished treatment.
I am not surprised you are not feeling well. You have been through such a lot. Have you had worse side effects with the eribulin than you had with the chemotherapy during the standard treatment? Your body must have taken a beating.
I was sorry to read that your DH is unwell with what sounds like a very bad bug. I do hope he will make a speedy recovery. We do have to remember that this breast cancer journey takes its toll on our loved ones. I was so glad to know that he did not have to go to ER. Hospitals are not places any of us want to be, especially during the winter months when all these nasty super-bugs are rife. It is certainly not where you need to be with low blood counts.
I do think it takes courage to go on trials after going through treatment. I can understand the fear. I think it is something that we all live with. Somehow we manage to survive. I think that although breast cancer is a very physical thing, it is also a very mental thing and it plays havoc with our minds and emotions. I know that in the early days I was glad to fall asleep, just to switch my mind off. I could not get the word cancer out of my mind. I think fear and anxiety are the big mental factors. What other kinds of feelings go through your mind?
Let us hope we shall learn a lot of good information from the eribulin trial. You and suze35 deserve a lot of credit for going on these trials.
I understand now why you are being put on Tamoxifen. I know that they do mixtures here as well. Seven years is a long time to be on medication, so I hope you will be monitored carefully. It is possible that your periods will return in due course. I know that is what happened to a younger friend of mine. I sometimes wonder how the medics work things out. My neighbour had breast cancer in both breasts at the age of 84 and had a bilateral mastectomy, followed by radiotherapy and then Tamoxifen. She is now in a nursing home and was 90 last year. Because she was quite unwell with other things the Tamoxifen was stopped. I wondered at the time why she was not given an aromatase inhibitor, such as Arimidex. Another neighbour, post-menopausal, was on Tamoxifen for about seven or eight years and did not go onto Arimidex. Two other women that I know, both menopausal, were put on Tamoxifen. It is probably because it is very cheap.
I shall be very interested to know how you get on with the textbooks from your friend, who has just completed the nursing programme at the local community college at which you applied. Be sure to let us know any useful information that you find.
I am sure that you will enjoy the life development psychology course that you are going to take on line in the summer. It sounds really fascinating. Do you know what it is all about? It is probably just what you need to take your mind off breast cancer. We all have to find ways of coping to take our minds off breast cancer, so that it occupies just a small part of our brain.
Wishing you all the best.
Sylvia0 -
Hello BernieEllen
Thank you for posting. It is great for you to have another Irish lady on the thread. What a coincidence that you are both on Lipitor. I know that it does belong to the group of statin drugs and that its chemical name is atorvastatin and is used to treat high blood cholesterol levels in patients who have not responded to other treatments, such as a special diet or lifestyle changes. I did not know that statins were used for high blood pressure, but I can see how they could work by helping to unclog the arteries.I hope you continue to do well. How do you spend your time these days?
Here in the UK we have gone back to winter weather. It is so cold here today. Roll on spring!!
Keep well. Best wishes.
Sylvia0 -
Hello linali
The bulbs are also beginning to shoot up here in Devon, UK. We should all focus on that to get us through the rest of winter. We have had some daffodils in bloom in the grounds of our apartment block since December. It is very therapeutic to see their bright yellow colours. I planted a lovely cyclamen that someone had bought for me and it has bloomed all through the winter. Temperatures went below freezing last night but it is still there showing off bright lilac colours.Best wishes
Sylvia0 -
Hello again christina 1961,
I have been catching up on my reading on the TN thread. I cannot believe all the side effects you are having. It is no wonder you are not feeling good and need to rest in bed. What do the doctors say about all this? It must be most frustrating, especially the memory problems. I do hope you will soon find some improvement. Thank goodness this trial will soon be over and you will have some time to recover your strength.
Thinking of you.
Best wishes
Sylvia
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Hello bak94
I have been catching up on my reading of the TNs and just wanted to say that I do so hope your trials and tribulations will soon be over. I cannot quite believe what has happened to you following your surgery. It feels as though the way you have been cared for leaves much to be desired. Normally you would expect to have your surgery, have a few weeks of recovery and then get onto radiotherapy. I hope there will not be much more delay.
Thinking of you.
Sylvia
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Thank you, Sylvia.. I haven't said much to the doctors about some of the side effects such as the "chemo brain" because it is so common and I definitely want to keep going forward in the trial. The neuropathy seems to get better at the end of the three week cycle so I am hoping it will go away when the trial is completed. I will probably keep the numbness in my index finger because it has never gone away during this past year. It started with the taxotere, but I had experienced transient numbness there before from an old mountain biking injury when I fell onto my left side and injured my shoulder.
I felt a bit better today and went for a two mile walk. It was really nice to get outside and I missed the rain that fell later. I also went to the grocery store, made soup, and washed some clothes so I have done more physically today than I have in two weeks!
It seems this drug is having a good effect for many patients and I notice that there are many trials with it as part of first line treatment popping up. So hopefully we will get good information from this trial and some of these others.
I'm not sure what the life stage development class content is yet, but hopefully I will know soon if I get the textbook from my friend. I'm glad to hear your daffodils are coming up. I have several in my yard right now. I also have some crocus bulbs in my kitchen that I never planted!! Do you know if I can plant them now?
In reference to taking care during chemo, I have tried to drink lots of water during this chemo, but it is much harder to keep the positive strong mind. I usually don't panic, but I actually had a mild panic attack the other night when I was having insomnia. I believe walking will help with this, and practicing some breathing exercises.
Sylvia, it brings me great hope to know that you have been in the clear now for almost 7 years! That is so wonderful and I am trying to follow your example for a better diet. I know you do not eat sweets, and eat whole grains and fresh vegetables. I also only eat fish and shellfish for animal protein although I haven't given up dairy foods yet. I do have a hard time staying completely away from sugar. I ate caramels last week a couple days in a row and have felt so guilty!!
Well, I am going to go make some cornbread for the lentil soup that I have in the crockpot. It is a very misty night out, with gentle rain. A good night for soup!
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Hello christina1961
Thank you for your very interesting post. I can understand why you have not mentioned some of the side effects of your treatment to your doctors, so that you can keep going on the trial. As you say, "chemo brain" appears to be fairly common as does the neuropathy. Docetaxel (Taxotere) is very hard on the body but it is very effective, so we have to be grateful. I lost my eyebrows and eyelashes on docetaxel.I was glad to know that you were feeling a bit better today and I am sure the two mile walk did you a lot of good. With the chores that you did as well, you are doing very well.
It is good to know that the eribulin is having a good effect for many patients and that there are lots of ongoing trials. I wonder whether this will become standard treatment for primary breast cancer. We so urgently need effective treatment that does not have the devastating effects of present treatment.
I am sure the daffodils must make us all feel cheerful. Here in Exmouth, the crocuses are peeping through as well. I cannot see why you would not be able to plant crocuses now. It is worth a try. They will just be a little late. February has come in with a bit of a shock here in the UK. Just when I was thinking we were going full speed ahead to springtime, the weather suddenly went very cold for the UK and there has been snow in many parts. In this country snow sends everyone into a panic.
I am sure that you have been doing all in your power during your treatment. With all the ups and downs of treatment, I can understand how difficult it is to keep the positive strong mind. I think that our doctors concentrate on the physical side of the disease, and do not have the time to think about the psychological effects of breast cancer treatment and diagnosis. It is easier to control the physical side effects of treatment than it is to soothe the brain with all the thoughts that go through it. I can understand how you can have panic attacks when you are lying unable to sleep. It is when you are lying awake that the brain goes into overdrive and you cannot control your thoughts.
Somehow you have to look forward with optimism. Look at everything you have achieved and survived since diagnosis. Very soon you will have finished the eribulin trial and can then put everything to the back of your mind. You will be able to join mccrimmon324 (Heather), Maria_Malta and BernieEllen to say that you have finished. You and bak94 are so near the finishing line now and I shall certainly keep supporting you and encouraging you to that finishing line. I hope our little group will do the same for you. I feel very close to all of you.
I am glad that my almost seven years in the clear is of help to you and I hope it is the same for all those viewing this thread. I am glad that I can also be of help with your diet. I would not worry about eating a few sweets, especially while you are going through treatment. We all need a few treats in life. I find that I need something sweet when I feel under stress or anxious. It is then that I feel the need for my favourite treat of 90% Lindt dark chocolate. Sometimes I have it with Green and Blacks organic cocoa and hot fresh soy milk enriched with calcium phosphate. I also find that organic raisins, dried figs or natural dried apricots also act as a good replacement for sugar. I have never been much of a sweet eater. Do not feel guilty about a few caramels. Life would be so miserable without having a few things that you like. My DH has a very sweet tooth.
It sounds to me as though you are on a healthy diet. It is not easy with all the temptations in the supermarkets. Ours are full of sweets and chocolates. Having got over Christmas, the shelves are full of chocolates and sweets for Valentines Day, and all kinds of chocolate eggs and rabbits for Easter.
It sounds as though you enjoy cooking and I am sure your lentil soup and cornbread were delicious.
I have just finished reading a book that I think would be of special interest to you and perhaps to others on the thread. The title is "How I Said Bah! To Cancer - A Guide to Thinking, Laughing, Living & Dancing Your Way Through Cancer". The author is Stephanie Butland with a foreword by Dr Edward de Bono. It was published in 2011. It is a very detailed account of Stephanie's experience with breast cancer. She had hormonal plus HER2 positive cancer diagnosed in 2008. One thing I realise from reading this book that going through treatment for this cancer is just as awful as going through TNBC. There are chapters about problems and infections with ports, and ordeals with trastuzumab (Herceptin) and lapitinib.
There is such a good emphasis on the thinking side of it all that I think it will appeal to you. I particularly liked the information about six thinking hats, which were colour-coded and helped to sort out thoughts and questions etc. It is written with a great sense of humour and yet seriousness.
You probably know that Dr Edward de Bono is the world's leading authority on thinking and the teaching of thinking as a skill. Stephanie is one of about 50 Master Trainers in de Bono's method world wide. One thing that stood out in my mind when reading this book is the following. "When you find that you have cancer, you step into a world where the physical is king". She then goes on to describe the journey that we all know so well. "But for me, the mind was the part that mattered". "Unless you have a cancer in your brain, the mind is not affected. And the mind is a powerful thing."
Another thing that stuck in my mind was the following. "When cancers are removed from the body, they are analysed and categorised. I had accidentally grown a HER2 positive, oestrogen-positive cancer. If the HER2 or oestrogen had 'negative after them', it would have been good news, because it would have meant that the cancer that had been growing in my breast had been doodling about on its own, a bit like those lone protesters you see in tents covered in pictures outside Downing Street. That 'positive' makes it a bit more of a force to be reckoned with: A bit more of an anti-nuclear protest march in 1984".
I know that the above will give you all food for thought. It made me remember what one of the senior breast cancer nurses said to me on diagnosis, which was that I was better off being HER2 negative than HER2 positive, because that was very aggressive. It also reminded me of what I have said before, on this thread, which is I am quite happy not to be taking Tamoxifen or Arimidex. They both have nasty side effects.
That is all for now. I hope you will have a good week, Christina, and I wish everybody else the same. I hope all is well with mccrimmon324 (Heather) as we have not heard from her in a while.
Keep looking ahead, Christina. You are doing very well.
Fond thoughts
Sylvia0 -
Hello bak 94,
I have been catching up with my reading of some of the other threads on the Triple Negative Forum and I was sorry to read that you are still having some problems and I felt that you seemed somewhat despondent and down. Try to look forward. Remember that all this will come to an end. You will feel better and you will get to radiotherapy, finish it and get back to a life after cancer. Look forward to spring and summer days. It has been one hell of a journey for you. Hang in there. Is there anything I can do to cheer you up?
Loving thoughts,
Sylvia. What a lot of heartache on the Calling all TNS. What is causing all this cancer?
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Sylvia, thank you! I feel very supported by you and others on this thread and Calling all TNS. I will look for this book and I had not heard of Dr. de Bono but I am very interested in reading more about this as I am determined to find a way to keep cancer from defeating my spirt.
As to the eribulin, one of the nurses told me that the nurses like this drug for their patients because the side effect profile is much better than some of the other drugs. I still have a full head of hair on it after 10 infusions, but my eyebrows and lashes are very sparse.
I had to laugh when you mentioned the snow as it seems things are not so different in the UK. Here in Tennessee, if snow is mentioned at all, there are long, long lines at the grocery stores. It is a running joke here because the snow is usually always gone in a day or two but it causes panic for some reason.
It was 60 today here with partly cloudy skies; a nice day again for a walk. I hope everyone has a good week!
Best always,
Christina
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Thank you Sylvia, just reading your post cheers me up! I learned something that I think relates to me in my psychology class. I think I am suffering from "learned helplessness"- a phenomenon in which exposure to inescapable and uncontrollable aversive events produces passive behavior. (Maier & others, 1969). I have to wait until chapter 12 to figure out what to do about it:) But regaining control somehow is important, I guess control what I can such as exercise, eating well and such. I have always been prone to depression and anxiety and this cancer stuff has just about put me over the edge. I must focus on the positives!
Christina-You certainly have been in this for the long haul also, as you were diagnosed before me!
I go to my rads set up tomorrow and hope to start the following Monday. My port infection appears to be gone, no more redness and the initial culture came back clear. My bs had opened up my wound (where they had taken the port out) and scraped all the yucky stuff out and reclosed it, doing dissolvable stitches on the inside and regular stitches on the skin. Seems that plus the antibiotics have done the trick finally!
Hoping Monday is a good day for everyone!
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Hello christina1961
Thank you for your post. I am so glad to know that you feel supported on this thread and on the Calling all TNS. I feel it is so important not to go through this long cancer journey on your own. It is important to know that others are going on the same journey and that they will share your fears and anxieties. It is so important not to bottle up all these feelings inside of you, as that will not help your immune system or your recovery. On these threads you can spill out everything that is bothering you and share with other people in a similar situation. I do admire the spirit of camaraderie that is so alive on the Calling all TNS and had nothing but admiration for how everybody rallied round for MBJ in her time of trouble. I am concerned about the number of American women being diagnosed with TNBC.I do hope you get to read the book How I Said Bah to Cancer, as well as work by Dr de Bono. In a way, the psychological part of being diagnosed with breast cancer is perhaps the most difficult. We do not have much choice but to get on with the physical part.
I am sure that you will not allow cancer to defeat your spirits. You are an American woman, and they are real fighters.
It is so good to know that your nurses told you that they like eribulin for their patients because the side effects are not so bad. It would be nice if we could move away from drugs such as epirubicin and the taxanes that have such devastating effects. Chemotherapy is so toxic to the body and can itself cause cancer, as can radiotherapy, so it would be good to get away from it all. I must admit I was concerned when I read yesterday that chemotherapy and radiotherapy can cause leukaemia later on, but in the meantime you can have years of quality of life. I decided that I had better put that away in the bottom draw and forget about it.
I am glad to know that you still have a full head of hair after ten infusions. That probably means you will not lose your hair. It is strange that it has affected your eyebrows and eyelashes. They are all fast growing cells. My eyelashes and eyebrows were not affected by the cyclophosphomide and epirubicin that I had first of all, but my hair started falling out after the first treatment of those two, but my eyebrows and eyelashes disappeared quite quickly after docetaxel (Taxotere).
It made me chuckle to read about how people react to snow in Tennessee. I thought it was only in this country that people seem to enjoy a bout of hysteria at the mention of the word snow. The media, television, radio and the newspapers all get into panic mode at the first hint of snow. On Sunday and Monday here the nation was on "red alert" as the Met Office sent out an amber warning. Snow fell on the east coast here and in the south east, but not where we are in the south west. There were flights cancelled at Heathrow, people stuck in cars and so on.... On Monday most of the snow had disappeared, but I bet a lot of people did not turn up for work. In the UK we cannot seem to cope with anything. There is definitely not the spirit of the London Blitz or the second world war that our parents and grandparents endured.
Yesterday was the 60th anniversary of Queen Elizabeth on the throne after the death of her father, George VI. I am not a monarchist, so I have no interest, but the excitement is building and will end in extravagant festivities in the summer, to be followed by the Olympics! I cannot understand why we still have a feudal monarchy after all these centuries. I would so like to see a republic with a president. Our monarchy is not even British. It has German roots going back to George of Hanover, who was brought over as George I of Britain. He did not even speak English!!!!
It sounds as though your weather is nice and mild.
I hope you have a good week, but do not work too hard.
Thinking of you
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Hello bak94
Thank you for your post. I am so glad to know that my post cheers you up.I was very interested to know that you are benefiting from your psychology class and that you think you are suffering from "learned helplessness". Are you sure you think that this applies to you? You have been through a cancer diagnosis twice, and are now very close to the end of all that. From what I have learned about you from the posts over the past 18 months is that you have done your best to get through it all and have not just sat back and felt sorry for yourself. A cancer journey is a difficult one as we all know and I think we all do our best to survive. You deserve a great deal of credit and applause for having got through this twice.
I shall look forward to your comments when you have gone through chapter 12 when there is information about dealing with the problem. I think it will be of help and interest to us all.
I think with cancer we have to, as you say, control what we can with our diet and exercise and perhaps our attitude to life, but there are no guarantees with this awful disease. What we must not do is blame ourselves. When all is said and done, I think it is the luck of the draw. I read recently that we should not talk about "getting" cancer but rather about our body "cancering" all the time. Cancer cells are within all of our bodies all of the time and most of the time our immune system knocks them out, but sometimes for complicated reasons fails to do this.
I do think it will help if you concentrate on the positive, count your blessings, and try not to focus on the negatives. The positives for all of us on these threads are that we are alive and have every reason to look forward. Not so long ago, without the chemotherapy and radiotherapy we have today, we would probably not be alive. We are lucky to have computers and the internet so that we can come together from all over the world and support one another.
Hang in there and focus on your radiotherapy. I shall be thinking of you on Monday February 13th and hoping all goes well. I hope all went well yesterday when you went to be set up for your rads. It is good to see a prototype machine before you start.
I hope you have a good week. Take it easy and relax.
Thinking of you
Sylvia0 -
Hello everyone, but special hellos to mccrimmon324 (Heather)
What are you doing with your days now that you have finished treatment?Maria_Malta: How did your trip to Venice go? If you are reading the thread, you will have seen that I mentioned Dr Edward de Bono. I read that he came from an aristocratic Maltese family. Have you read anything by him?
BernieEllen: I hope you are well. We need some of your Irish spirit and wit to keep us all going.
To the newcomers, linali and I -sha. I hope all is well.
Best Wishes,
Sylvia.
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Hi Sylvia,
I'm doing ok. Been trying to get back to a normal routine. We are planning a vacation in mid march to Rome and Paris so I'm starting to get excited about that. I'm also trying to get back into 3 nights a week at the gym as well as doing my eliptical at home. That seems to be taking up a lot of my time. Would be nice if I would see results a little faster but as least I'm doing it. I thought I read somewhere that exercise was just as effective as chemo but have been unable to find anything on it. It may have been a dream, I guess. I still read all of your posts, just haven't posted often. I am happy to report I think I actually need a bit of a trim on the side of my head but am waiting another month for my hair appt before I trim anything.
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Hello bak 94,
I was so sorry to read that you had had a fall and had hurt your knees and toe. I do hope everything will be alright. You must learn to relax and not worry. You have nearly finished and will soon be able to put this cancer stuff behind you. Relax completely until Monday. Do not worry about negative comments about TNBC. All our cancers are very personal. I do hope the phone call was nothing important. If it is you will deal with it.
Sending you strong support from over the pond.
Your friend, Sylvia.
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Hello mcrimmon 324,
It was so nice to read your post. I am so glad to know that you are getting your life back to normal. That is the way to go. I am sure that all your exercise can have nothing but huge benefits. Keep it up.
You must be looking forward to that holiday in Rome in March. It will soon come around. What a good way to celebrate the end of treatment and the end of winter! Let us know how the holidays go.
I can almost feel your fitness here in the UK. I am glad all is well with the hair,
You are a great encouragement to all of those going through treatment.
Kind Thoughts
Sylvia.
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Hello everyone again,
I read recently about an elderly lady who had died from an infection from bedsores in one of our UK hospitals. It is a sad indictment of neglect in our hospitals, but one that is common. It was all the more tragic in that this lady had battled breast cancer for fifty years! That shows you just how long you can survive.
NICE the scrooge is well and alive again and holding back funding for two drugs of substantial benefit to men with advanced prostate cancer. We need to get rid of this organisation. What are we paying our taxes for?
The government is also remiss in that it is cutting benefits for cancer patients?
How can we call ourselves civilised?
Sylvia.
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Hello christina 1961,
I thought you woud like to know that I just came across an advert for the benefits of exercising during chemotherapy. Have a read of it on the breastcancer.org forum. It is under chemotherapy and exercise as an article.
http://community.breastcancer.org/blog/chemotherapy-and-exercise/
There is also a dvd advertised about the "pathway to wellness". Have a look and tell me what you think.
Best wishes
Sylvia
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Good morning, I hope everyone is keeping well. I returned Monday from my break in Belgium, had a great time, relaxing and socialising. It is always good to meet up with friends and forget about all the cares in the world. Very cold over there but dry and fresh, so managed to spend some time outside. I love being outside in the fresh air and now we are starting to see the first signs of spring.
Bernie
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Hello dear Sylvia and co,
I've been reading but not writing as I wanted to upload photos of Venice, but we used my friend's camera and she keeps forgetting to pass on her usb for me to upload the photos on my machine...Venice was totally amazing. We were lucky to go when we did as last weekend parts of the lagoon actually froze over, and many flights were cancelled. In our case, although very cold, we had blue skies and sunshine, and weather couldn't have been better. As it was January there were very few tourists and we didn't ever have to wait in queues to get in anywhere, including 'must-see' places, like the San Marco Basilica. I was totally captivated by the whole city, and will certainly return. There is lots to see in terms of museums, churches, original Tintorettos, Titians, Bellinis, Veronese, and countless other artists seemingly casually displayed in the numerous churches and palaces, but just walking around is a joy in itself as every building tells a story, and wherever you look you see beautiful architecture, bridges, statues, and the winding canals which create such an air of magic and mystery. I'm sure those of you who have visited Venice would agree with me, and for those who haven't I strongly recommend you put it on your list of places to visit!
Yes, Sylvia, Edward de Bono is Maltese and about 30 years ago wrote a book about what he called 'lateral thinking', and came up with his different 'thinking caps'. He came to talk to the teachers at my school a few years ago, and I found his approach to problem solving very interesting.
I strongly believe in physical exercise, and had always kept myself reasonably fit before bc. At the start of 2012, as I had just finished treatment I started power walking again, as well as yoga, which I do twice a week. I find yoga excellent for making me more supple as well as great mentally. After my yoga class I always feel calm and peaceful, all tension having melted away. So basically I'm walking (as fast as I can) for about 35 minutes at least 3 times a week and doing yoga twice. Next week intend to increase walking time.
Physically I'm feeling well, but I find that I'm quite tense and find myself worrying that there is something to worry about, and keep having to tell myself that no, at present, there isn't anything to worry about. I'm pretty sure this is the result of 10 months of cancer treatment, and although I try not to talk about it too much, it's there lurking, and I think there is this unacknowledged fear that like a savage dog it is biding its time before pouncing again...sorry, I know I should be positive, but I'm sure you know what I mean. HOWEVER, it does feel good to be getting on with my life again. Bye for now...
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