Calling all triple negative breast cancer patients in the UK
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HI, Sylvia
I think the latest post from Chris Woollams is very interesting, I don't know whether to post any more links, I don't know if anyone is reading them besides you and I.
I am still surprised at myself for passing over my own hormone supplement use when pondering why I developed BC, it could very well have been one of the causes. I have also read elsewhere that too much soy is an estrogen stimulator.
I also share your views about stress being a cancer activator. I have a clear memory of a day, this may mean something and maybe not. I had had a clear mammogram in September 2013, I had a annual full physical check-up with my gynecologist in December 2013. Nothing abnormal. In January 2014 I was at our farm trying to clear a frozen pipe outside on a very cold snowy day. I had taken my husband back to the hospital the day before, he was very ill and would have to be there for close to a week again. I felt the weight of the world on my shoulders, and about then my brother drove up and asked what I was doing. I told him what was going on and I told him, "I don't know what I'm going to do, I think I am going to pop!" It was a couple of weeks later that I found the lump in my breast, and I thought to myself, I did pop!
Since then, I have read many stories of women with BC, especially TNBC, whose tumors seemed to come overnight, and gave them no warning. I can also feel the stress in my body when it's high, I try to get into deep breathing and relax. I'm pretty sure the cancer came about for a combination of reasons, but I will always believe that stress was the kicker, the activator.
I skipped over the article on womb cancer, I don't have one anymore so it is somewhat of a relief to have one body part I don't have to think about! I don't hear too much around here about people with womb cancer, mostly it's BC, and mostly E+ BC.
The prostate cancer is also common, it seems. I know several men who are on the estrogen as treatment, and they have gone through all the things many women go through in menopause. Hot sweats, weight gain, and feeling generally bad. Some of them have had chemo, some have not.
As for the bone strength, I had a very good bone density test last fall, I really upped my Vitamin D3 intake and took Calcium but not a huge amount. Diet is important, we get a lot of Vitamin D in the leafy greens and other foods in the Rainbow Diet. We don't get much sun in the winter, it stays quite gray most of the time.
I will come back to this later, have to leave again, talk to you soon
Love, Mary
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Hi, Marias
Just a note to say I hope you are feeling well and stronger, you did look great in the recent picture you sent. I am wishing the best results for you.
Love, Mary
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Hello Mary and LoveAndLight88,
Thank you for your posts. I shall try to respond over the weekend. I am rather overloaded with things at the moment.
Love.
Sylvia xxxx
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Hi Sylvia, Mary and all
Thank you so much for all your kind and helpful words.
Sylvia, I think I really need to take some months off to to do chemo days better. But I'm sure I miss all my classes and students. We always have a great time together regardless of their levels and ages. But I think I will continue teacher observation as it's not that demanding.
I have recovered from my surgery , but unfortunately I've had an allergic reaction to the CTscan drugs. I've bad rashes all through my abdomen and back which itch badly. I went to emergency and had a serum with three other injections to feel some comfort from all the itching. Also, the doctor gave me some ointment to apply locally to the affected areas. My MO wanted to order a petscan but that couldn't be done until one months after surgery and he wants me to not to lose time to start chemo. I still don't know whether this one is also TN or not.
As what you said about stress, I think this could be a reason for my recurrence. In the last 5 or 6 months I was in a very bad stress because of what was happening in my family. My brother, his wife and their children were all my loved ones and seeing how all the love between them changed into being bitter enemies really devastated me. I could give the right to all of them and blame all of them at the same time. My brother's wife deserted her children for some weeks and I had to take care of them and tried to do my best to help them feel some comfort. Yet, after their mother let them go back to her, she asked them to promis her never want to see me, my brother, or my family anymore just to hurt my brother more. You know children always feel more comfotable being in their own home with their mother. So they accepted it forgetting all we had done to help them and keep them happy. My brother had to leave his own house just for the sake of his two daughter's comfort. The only reason his wife brings is that she doesn't love my brother and doesn't want to continue. But she chose a cruel way to seperate and accepted her children just to gain all my brother's property. This and a lot of other related things espessially my parents sorrow and sadness put me under big stress which eventually led to all these.
Mary, Jeol Oteen is who has given me peace of mind with all his sermons. Whenever I feel down, I listen to one of his sermons and get my energy back. If I could ever get a chance to travel to the US, I would never miss the chance to attend Lakewood church. I deeply believe God is the God of all human beings regardless of their race or religion. I hate all kinds of religious or racial extremism. None of us had the chance to choose our race or religion.
I hope I come here with some good news about my results.
Love
Hanieh
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Hello Everyone,
I can't always post when I want to, but I've been reading. I'm very convinced about the stress/cancer link. I may have shared before, but my MO told me to "minimize stress," and "take it easy." Sometimes I think these are the hardest jobs of all. I know that I can feel my stress physically, and am not at all surprised that stress can open the door for cancer in our bodies.
I'm trying to be intentional about controlling my reactions to difficult people and situations, and I hope I've made some progress at it. I make myself go for a walk break when things get too crazy at work. And I try to remember that sometimes getting upset is a choice. But the most ironic thing is that the monitoring that I get to ensure that I'm safe from cancer is probably what causes the most stress.
I checked into a Triple Negative Facebook group, but may not continue. There is good support and info, but it can also be scary. There are thousands of members, and they're adding 20 - 30 new members every few days. Someone there mentioned that Melatonin is good for us, so I may research that a little. I have taken it, though, wanting help for sleep, and it didn't do much for me.
Members of that group talked about possible causes for their cancer, and many of them thought it was cell phones. If that's true, it would explain the surge of new cases, and possibly the surge of younger patients.
Finally, Mary, I hope you are able to see the Last Bookstore. It can be reached on the Metro, along with Hollywood Blvd. You may already know, but Downtown LA and Hollywood have their share of eccentrics, mentally ill, and/or homeless folks. We've never had a problem, but it's good to be aware and cautious in those areas.
Hoping everyone is as stress-free as possible today,
Pam
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Sylvia,
I was driving again yesterday, I put my radio on Doctor Radio and a doctor was being interviewed. She was Dr. Marisa Weiss, she is the founder of breastcancer.org. She is also a BC survivor of many years. They were mostly talking about the influence of media and social media on matters of healthcare. The first topic she used for an example was bitter apricot seeds, and how many people are taking them because they have read about it on social media. She also brought up an example of a man who became very ill from an overdose of it because he took quantities of it that were much too large. Anyway, she sounded like a lovely person, I would like to have her as a doc if I was in Philadelphia! I couldn't listen to all of it because I had to get out of the car, just thought it fascinating that she started this very website!
I also wanted to tell you that some days when I am fixing myself an evening meal I turn on the LBC radio from UK. I never get Nigel Farage that time of day, but I get some interesting listening. Ian Collins sometimes, and some others, and then the people who phone in. It's interesting to me that sometimes, even though they are speaking English, I can't understand them unless I listen very carefully because of the different accents. And the advertisements sound exactly like ours, loud and annoying! I like listening very much, even if I don't agree it's interesting to hear their point of view.
Mary
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Hi, Hanieh
So sorry you developed an itching allergy to CT scan drugs, I'm glad they had something to give you to make it stop. I suppose you can still have the PET scan during chemo, but I guess they would like to get a baseline image and then compare data later to see if anything has changed.
It sounds like you are moving closer to a decision to take some time off work to get more rest. That's probably a wise thing to do, even though you will miss all your students, I'm sure they will want what's best for you too.
Your whole family has been through a lot with the break-up of your brother and his wife. It is so unfortunate when a person uses their children in a situation like this to cause pain to someone else. I have seen this many times, it can only be bad for the children. You, as an aunt, are really quite helpless to do anything which does cause a very large amount of stress. You feel the pain and sadness but can't do much about it. I hope as time goes by, feelings will soften and you will be able to feel closeness with the children again.
Again, I am so glad that listening to Joel Osteen helps you.
I will be hoping and praying for good news about your results!
Love, Mary
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Hello LoveAndLight88,
Thank you for your latest post and for your PM. I was interested to know that your mother was the one with the underactive thyroid gland. I noticed that you said that she was on thyroxine (this is a synthetic form of the natural thyroxine produced by the thyroid gland. You said that she had been on it for sixteen years. Does that mean she is not on it now? I thought that you had to be on it for life. Did the thyroid normalise and so she was able to come off it. I am sure you will find those two threads about parathyroid and thyroid very interesting.
Thank you for letting us know that your mum will be taking the genetic test for BRCA genes in two weeks time.
How is your aunt getting on? Is she having the same breast cancer treatment as your mum? It would be interesting to know if she is being given the same chemotherapy drugs as your mother. Does she have IDC and triple negative receptors?
As for the lymphoedema, I am waiting for my appointment on Tuesday December 5th.
I have done a lot of research on this and think that it is not getting enough mention when patients are diagnosed with breast cancer (or other cancers such as prostate) and are only told about it if and when they develop it. Apparently it is very common and overlooked and GPs do not know much about it. There are many reasons why people develop it. It is not exclusive to cancer.
From what I have been reading, with reference to breast cancer, it is common to develop it, especially when lymph nodes have been removed and the lymph system has been damaged and lymph does not circulate properly around the lymph system.
I think it is very important for all newly diagnosed patients to ask their breast cancer surgeon and oncologist about the risk of lymphoedema. This can also be caused through simple surgery, chemotherapy drugs and radiotherapy. It can happen at any time, even years after treatment, as is my case. I have read that it is chronic and can cause all sorts of problems. I am hoping, none the less, that I shall be able to get rid of it. I am doing all the recommended exercises and making sure I keep my right arm active and elevated when sitting.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I think you are right that the latest email from Chris Woollams is very interesting. I have read it through a few times and then have clicked on all the headings and then clicked some headings within that. It is a lot of information to take in. On clicking within the headings I found one article of particular interest, entitled Triple Negative Breast Cancer – overview and treatments. It does say that this is not the complete article, but a work in progress. These are some of the headings to this article.
What exactly is triple negative breast cancer?
Who gets breast cancer?
TRIPLE NEGATIVE BREAST CANCER IS DEFINITELY A CANCER INCREASING IN YOUNGER WOMEN.
Causes of TNBC.
Can breast cancer run in families?
Other contributory factors too breast cancer and TNBC.
Lifestyle factors – smoking, alcohol.
Dietary factors – not having a healthy diet.
Other factors – not having adequate blood levels of vitamin D.
Your gut bacteria are crucial. You need good gut bacteria to have a good working immune system and a good immune memory.
Environmental toxins and TNBC (have a look at more details about this in the article).
Diagnosis – apparently about 52,000 cases of breast cancer will be diagnosed in the UK in the next twelve months. Some of these will be false positives diagnosed through mammograms.
That roughly sums up what is in this article.
I think that it is probably important to get second opinions on anything where you are in doubt.
We must remember this is an incomplete article.
I think that, if people on the thread are interested in Chris Woollams and/or Cancer Active they can sign up for his email and then find online anything of interest to them.
I read with interest your information about how you think you may have sparked something off by the stress of that day and of course you were under stress from looking after your husband.
I strained myself one day doing some hard pruning in my brother's garden with a pair of blunt secateurs. I did not take much notice of it but it was not long after that I discovered a large lump, which seemed to come from nowhere. There have been other such tales on the thread.
There are so many risk factors that we shall never know for certain why we developed breast cancer, but I have no doubt that for me stress played an important role.
I think it is important to focus on the things we can now control, rather than trying to identify causes in the past. It is unlikely to be one thing. I try to control my stress but since I am a worrier it is quite difficult. I also find it hard to put myself before others.
I think all of us on the thread know the importance of vitamin D, especially during the months when there is little sunshine. We all know the importance of the rainbow/Mediterranean diet and physical and mental exercise.
I am reading that book on lymphoedema and I realise more and more that it is not mentioned or emphasised enough when we are first diagnosed. It can happen to any of us and can become a nasty, chronic condition and is not exclusive to cancer.
That is all for today.
Love.
Sylvia xxxx
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Hello Hanieh and Pam,
Thank you for your posts. I am out of time for today but I shall try to answer tomorrow.
Hanieh, I am so sorry to hear what has happened from a CT scan. I shall write more later.
Love to you both.
Sylvia xxxx
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Hello Everyone
I’ve been away from the boards. Things are well. I’m scheduled for my second mammogram post diagnosis later this month.
I no longer have white coat anxiety. I have a lot to catch up on this thread. Gentle thoughts to our new friends. It’s encouraging to come to this thread and see my fellow warriors.
LilyP I too read an article regarding cell phone use. I believe environmental factors play a role in breast cancer. Just not sure how much of a role.
I’ve been quite busy meeting the deadline for my short story submissions. My agent takes a preview of the story to publishers. They review the submissions then if interested they buy them for later publication.
So far I’ve had 5 accepted. Now I have to finish them. They could/will appear in magazines such as Readers Digest, GoodHousekeeping etc. I never know where or when until the last moment.
The problem is sometimes I have an idea. Then I get stuck. I published endlessly in the 80’s and 90’s. Most were about motherhood, young marriage and such.
Much thanks to Sylvia and Mary. You keep this thread going. There are many who lurk but do not post. You keep us going.
Val
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Hello Hanieh,
I am sure you will make the right decision about what leave to take while you are going through chemotherapy.
It is good news that you have recovered from your surgery. It is very unfortunate that you have had an allergic reaction to the drugs used for the CT scan. I do hope you are recovering from this. Itching can be very tiring. You need to feel as well as you possible can when starting chemotherapy. If you are feeling below par, chemotherapy will seem more difficult. You need a strong mental attitude to get through chemotherapy and to take great care of yourself. It is time for those around you, and yourself, to give out lots of tender loving care.
Please let us know what kind of breast cancer this is, what the receptor status is and the stage, grade and node status. I would have thought you would know these after surgery.
I do hope you will soon be told what chemotherapy drugs you are going to have.
I believe that stress does play an important part in the development of cancer, but it will not be the only factor. Breast cancer is multi-causal. I had a large tumour, 6 cms+, in June 2005 and the breast cancer consultant surgeon told me it had probably taken two or three years to develop. Those years before 2005 had been very stressful for me. We had moved from the south east of England to the south west and we are told that moving home is one of the major stresses in life, along with marriage break up and bereavement.
You must try to put all the family upsets behind you and give all your effort and concentration to getting through chemotherapy. Remember that time is the great healer.
Keep in touch and look after yourself.
Love.
Sylvia xxxx
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Hello Pam,
Thank you for checking in. I totally agree with you about stress. It is true that we can feel the stress going through our body when we are under it. We know that negative stress is bad for us and we have to try to avoid it. One good way is keeping negative people at bay. I think laughter and acts of kindness are a good way of relieving stress. As you say, getting upset is a choice.
I was interested to know that you had checked into a Triple Negative Facebook group. I was asked on several occasions to do this, but I have always said no. I do not want to join Facebook at all or Twitter. I think it is much better to joining a forum within a charity where there are moderators to keep an eye on what is being said. I think there may be too much false information floating around and that you have to think carefully about what you are saying. We have to remember that we are not doctors and we cannot give advice. We are here to relate our own experiences and help people through the challenging journey that is cancer. We all experience this journey differently and we cannot say that others will have the same experiences.
I cannot see that a thread with thousands of members which is increasing all the time can end up with much meaning. You cannot possibly get to know these people. In our small group I do feel that I have got to know some of you. All kinds of information can be picked up on these threads and that information may do more harm than good. Melatonin is something that should be produced when we are sleeping. Hence the importance of good sound sleep every night.
As I have been saying, I think that breast cancer is multi-causal and that there probably will not be one cause. I have recently posted risk factors about which I have read. There are quite a lot of them but as my breast cancer consultant surgeon told me, they are just risk factors. It does not mean necessarily that they caused your cancer. Trying to find a definite cause is, I think, quite unlikely.
That is all for today.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your last post. I did know about Doctor Marisa Weiss, the founder of breastcancer.org. I do remember being told on the forum some years ago. If I remember correctly, she had hormonal breast cancer and decided, I think, not to do chemotherapy. I do not remember whether she did radiotherapy.
I see that bitter apricot seeds is becoming a favourite topic of conversation. There are plenty of other foods that we eat that contain amygdalin but nobody is talking about banning them! They are readily available here in my local natural food store. No claims are made about cancer cures. I would think there are many things that would make you ill if you overloaded on them. There is also the thing about laetrile which is a purified, concentrated form of amygdalin, that people have been taking as injections or supplements. I would not go near that stuff. There is also the fact that bitter apricot seeds do not contain cyanide. Somehow, when eaten, and through some process in the gut, a cyanide is formed. I think this subject is best discussed on the Alternative forum.
I was interested to know that you are listening to LBC radio from the UK. It is a talk radio show, that is on 24/7. I try to listen to Nigel Farage who is on Monday to Thursday 7 pm until 8 pm our time. He is also on every Sunday from 10 am to noon our time. There are always interesting conversations going on but there is too much advertising and not enough calls. Of course, Nigel talks a lot about Brexit.
I think he should have stayed as leader of his party and I think he made a great mistake telling people to vote tactically and vote for Theresa May because she would 'deliver' Brexit. In so doing, he has killed off his own party and we must have one of the worst governments ever. I am still not convinced we shall leave the EU. At the moment it seems people are going gaga, the tabloids especially, over a 'royal wedding' next year. I find that a big yawn. There is also a royal birth. I think all that waste of money and display of privilege is a slap in the face to all the people struggling here to make ends meet. It is just like Marie Antoinette telling the French to eat cake, way back when. Enough said!!
I am not surprised you have trouble understanding all those different accents. In addition, language has deteriorated here and people are not very articulate.
That is about all for now. I still have lots of information to post gradually about lymphoedema.
Take care.
Love.
Sylvia xxxx
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Hello Val,
Thank you for your post and for popping in to let us know all is well with you.
I shall answer in more detail during the week.
Fond thoughts.
Sylvia xxxx
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Hello adagio,
It is a while since we heard from you, so I hope all is well.
Hello Rhonda,
Keep in touch when you can and let us know all is well with you.
Hello Kathseward,
How are you and how is your interesting work going? I am convinced that the dreaded flu injection started off all this lymphoedema. It appears it is a chronic condition, not very pleasant, common but under-diagnosed.
Hello Lou,
Have you started work yet?
Hello Marias,
Your silence has got me worried and I am wondering how you are.
Hello Angie in the US, Galway in Ireland, 53Nancy in Manitoba, Canada, and Kathy UK posting for her sister.
I hope you are all well. If you have decided to move on, please let us know.
Hello LoveAndLight,
Thank you for your contribution to the thread this past month.
Best wishes to everyone, posters and viewers.
Sylvia xxxx
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Hi Sylvia,
I got in touch with a lady called karen, she's running Gerald Green's practice now. She gave me alot of info on what herbs/capsules to take before/during/after chemo. I was just wondering what were the alternative meds you took that helped you through chemo. Wormwood and Oral Iscador are two that i have ordered so far. What are your recommendations ! x
Sarah
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Hello Sarah,
I was very concerned about the post you have just sent. I do not think you should just be ordering things to take during your mother's chemotherapy or radiotherapy without any medical consultation.
I was very surprised that Karen, who is running Gerald Green's practice now, has given you a lot of information about herbs, capsules etc. for your mother to take before, during and after chemotherapy. I thought that Gerald Green did not treat any patients who had decided to have orthodox treatment. He certainly did not treat me. I did write to him, after I was diagnosed, but BEFORE I decided to have orthodox treatment. From him I just had wormwood and astragalus to boost the immune system. I did not have anything from him once I started orthodox treatment.
When I saw my breast cancer consultant at the NHS hospital, and I was trying to make up my mind about orthodox medicine, I asked her what else I could do before making up my mind. She referred me to the NHS hospital in Bristol where I saw a consultant who had been a cancer consultant and had then become a homoeopathic cancer consultant. I had a long consultation with her and she told me that I needed to have the orthodox treatment and that she could help at each stage with homoeopathic medication within the NHS. All my consultations with her were written up by her and sent to my breast cancer consultant. She prescribed some immune boosters before I started treatment and then oral Iscador through my treatment. This was all done within the NHS. This consultant gave prescriptions to the pharmacy at the Bristol hospital and these were then sent to me. I would not have dreamt of self-prescribing.
I am not a doctor and I cannot give recommendations. You must understand that on this forum we are here to support and encourage you through treatment, but we are not allowed to give advice or recommendations.
Your mother should follow the advice of her medical team throughout treatment and she would be wise to follow that advice very carefully. Chemotherapy is serious treatment in which your drugs are chosen for you in the dose that you need and you must follow the instructions given by the oncologist. If there are any problems your mother's medical team will know how to handle them.
As I have said before, I do not think I would have survived without the orthodox treatment and I have no idea how much the homoeopathic treatment helped. All I can say is that I went through chemotherapy and got through it without feeling ill, but I kept myself well hydrated, took all the rest I needed, kept looking forward and ate healthily and simply.
Be careful what you are doing. Listen to the medical team and heed their advice.
I hope this helps and I wish your mother all the best while she goes through treatment. Please remember this forum is for support and motivation during treatment. We have all been through the treatment.
Fond thoughts.
Sylvia xxxx
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HI, Pam
I don't think there's any way we can get through this life without stress, but it's probably all in how we handle it, and there are different kinds of stresses. I think the really harmful stress comes and combines with a feeling of hopelessness, the feeling that there's nothing you can do about it. One of the books I read called "Anti-Cancer; A New Way of Life", was written by a doctor/cancer survivor, David Servan-Schreiber MD. When he was diagnosed with brain cancer he became very active in trying to find out the whys and wherefores. He has devoted a large chapter of his book to the study of psychological stimuli in the development of cancer. There is too much to quote here, but the fact is there have been many studies done on the influence of the mind in this area; he mentions that, as an example, there may have been a trauma in childhood, the person finds a way to cope and moves on. There may be another trauma in a similar vein, and another and the person is forced to find a way to deal with each and every one or fall into a state of depression. This doctor/author has reached the conclusion that stress and the feeling of being hopeless/helpless is not a direct cause of cancer, but can cause it to grow and spread faster, and lead to shorter survival times. It is quite a good book all-around, one of the better cancer-themed books I have read. I am going to include a quote from the book that describes exactly my situation at the time of my diagnosis; "Most patients I've known remember a period of particular stress in the months or years preceding the diagnosis of their cancer. Usually it was an ordeal that created a terrible feeling of helplessness. Many of us have been confronted with a chronic conflict that seems insoluble, or with overwhelming obligations that create a feeling of suffocation." Bingo!
The fact that you, Pam, can leave work when it is stressful, and take a break and go for a walk is probably the best thing for you. The ideal is that we can do something positive about our situation, and the problem arises when we feel there is nothing we can do.
I have heard about the idea that cell phones, Wi-Fi, etc. may influence cancer, if that's true we are all in big trouble.
Thanks for giving the heads-up about the situation in Downtown LA, I guess the nice weather year-round makes it easier to live on the streets there. I hope we can manage to get out there this winter while the weather is cold here. My traveling buddy is in Ireland right now, having a great time, I'm sure.
Talk to you again soon, love,
Mary
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Sylvia,
I think you're absolutely right. The large triple negative Facebook group tends to provide more worry than comfort. There is absolutely no way to get to know so many members, either. It has been most useful when a simple question is asked, and many members respond with their details - sort of like a polling device.
As for Melatonin, which has been discussed here, I'm planning to get some improved curtains to black out my bedroom more effectively. That way I can forget about the supplements, which I don't care for anyway.
And yes, avoiding negative people, getting some laughs, and performing acts of kindness are my missions in life these days. I haven't had that much trouble keeping cancer off of my mind, but now I'm being watched for a trend of elevated tumor markers. Even though the increases are tiny, and below the "normal" range, the fact that I didn't get a 3 month reprieve makes peace of mind difficult to achieve.
I've been going back to a difficult yoga class, with an instructor who knows me and my situation. I've been slowly increasing my difficulty there, and feeling great afterward.
We'll be thinking of you and your appointment tomorrow, 12/5.
Mary,
Yes, absolutely, it's not just simple stress that opens the door to trouble, but the times when we are overwhelmed with helplessness or hopelessness. I'm pretty sure that I have that Anti Cancer book. I need to get back to it - at least to the psychological portions. As far as being proactive, it's really comforting when I take a walk and it clears my mind and emotions. It gives me a feeling of control. I can feel the fight or flight feelings draining away. I also get flashes of inspiration or insight when I'm not stuck inside, obsessing over some problem.
When I think about how I got through the initial testing and shock before I had a diagnosis and chemo plan, I tend to forget that I requested and was prescribed a very small dose of Ativan for anxiety. I take once a day it to sleep when needed, and found that small dose gives me a better sense of balance in general.
I hope that you get the chance to travel and experience our warm weather this winter.
Pam0 -
Hi everyone
Life is very busy now and I'm about to start holidays on Friday for the Christmas break. We have so many people particularly health care workers coming to Australia from high tb incidence countries and my clinics are get quite big as they all need review. We have also been investigating a Q fever outbreak and it looks like our paper will be published so I'm very excited about that .
I see my onco this Friday and once again terror has struck. All my bloods were good but I still have lots of bone pain which scares me. I have always had arthritis and I know taxol can exacerbate it but I'm still always so scared. Need to stop looking over my shoulder.and be gratfor each day.
Much love to all
Kat
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Hello Sylvia, Mary and all
My CT scan of abdomen was clear and I had normal blood test with normal tumour markers. Tomorrow I will have brain MRI and bone scan and next week I will start chemo.
This recurrence is again TN which maid my Mo unhappy. Yet, to be honest, I'm somehow happy. I don't know whether I'm insane to be happy with that. Going through hormonal treatment is not easy at all. I hope this time I beat it. All the doctors I talked to believe that my last chemo regimen was not sufficient because I didn't have taxans. This time my new Mo suggested taxans and Carboplatine. My treatment may take up to six month with complete hair loss. I was really enjoying my long hair and it is somehow hard on me. Cold cap didn't work for me last time and I'm not into it again.
Wish you all the best
Hanieh
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Hello Hanieh,
Thank you for your post. I was glad to read that your CT scan of the abdomen was clear and that everything was normal with your tumour markers.
I do hope all will be well tomorrow when you have an MRI scan for the brain.
I do hope that you will also have good news from the bone scan. What kind of bone scan are you having? Is it the bone nuclide scan to see if all is clear inside the bones, or is it a DEXA scan to see whether you have osteoporosis or osteopenia from all your previous cancer treatment.
It is good that your consultant is being thorough.
I had a CT scan and a bone nuclide scan before all my treatment and after I had finished it all.
It is a good idea to have a DEXA scan to ascertain the state of your bones before you start all your treatment and then another one after it to see what damage has been done to the bones. Cancer treatment does cause bone problems.
I did find it strange that the first time around you were not offered one of the taxane drugs, but the chemotherapy regimes do vary a little, but not that much. Do you know which taxane drug you are having? I had docetaxel (Taxotere) and my oncologist told me she had chosen this one because it was less harmful on the heart. The other taxane drug is paclitaxel (Taxol) and she said this was more harmful. At the time it seemed that docetaxel was being used in the UK and paclitaxel more in the US. I now get the impression that paclitaxel seems to be used more in general. I do not know why. I did read once that they were sourced from different types of the same tree, the yew tree, growing in the two countries.
As for carboplatin, that is a drug that is often added now to the regimen.
It is not unusual to have six months of chemotherapy. I had epirubicin (Ellence) and cyclophosphomide together for three months, every three weeks, and then I had docetaxel (Taxotere) for the next three months, every three weeks.
It was the docetaxel that has had the long lasting side effects, such as peripheral neuropathy in the feet.
I have recently read that paclitaxel (Taxol) is implicated in lymphoedema, so I suppose docetaxel (Taxotere) will probably be implicated as well.
The women on the thread have said they found having the taxane drugs weekly rather than every three weeks easier to deal with.
Hair loss is common with all of these chemotherapy drugs that are used as standard, but it will grow back.
It is traumatic losing your hair but you can find very nice wigs. I still have mine, just in case!
Thank you for letting us know that your receptor status is again triple negative. I can understand that you feel happier about this. I was always glad that my breast cancer was not hormonal because I would have been very reluctant to have ten years of tamoxifen or aromatase inhibitors. The women I know here in Exmouth were not at all happy with these drugs. Tamoxifen makes you put on weight and apparently can make you feel awful. I know someone else who was triple negative at 38 and had a new tumour in the other breast last year which was hormonal. She has been on tamoxifen for some months, has been unwell with it and has been taken off. She was diagnosed in 2005, the same time as I was, and was fine until last year. I always say be positive about being negative. After treatment it enables you to stay off drugs, eat healthily and build up your immune system. Doctors are always negative if there is no drug available or surgery. Because I was non-hormonal, I was told the prognosis was not good, but I just took no notice.
Make sure you ask your consultant about lymphoedema. This is a common side effect of breast cancer treatment, from surgery, chemotherapy and radiotherapy and patients are not told about it before their treatment. It causes swelling from a damaged lymph system. This is a chronic side effect for which there is treatment, but not in the form of drugs or surgery. It can happen any time. It happened to me two months ago and I am wearing a compression sleeve on my right arm to try to get the swelling down.
That is all for now. Keep positive, keep well hydrated, avoid stress as much as you can and keep looking forward.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your post. You must be looking forward to Friday to start your Christmas break.
As always I was very interested in what you are doing at work. That work must keep you on your toes. What is Q fever and where was the outbreak?
I do hope all goes well when you see your oncologist on Friday.
I do hope you can get to the bottom of your bone pain. It could be arthritis but if you have any doubts you should get it checked out.
It looks as though the taxanes are causing lots of problems. It seems that the situation has not improved with the introduction of these newer drugs. I think for a long time it was just doxorubicin (Adriamycin), cyclophosphomide (Cytoxan) and fluorouracil and epirubicin (Ellence). When I was diagnosed the taxanes were relatively new. Since then the platins have been added.
I do hope all goes well and please let us know.
I went to the hospital yesterday for my appointment about lymphoedema. I did not enjoy going back one bit. I had a very nice lymphoedema nurse and one with a lot of experience. I have been given a temporary compression sleeve to wear while a stronger one is ordered. It is supposed to help bring the swelling down. I have been reading the latest book on lymphoedema which has been very informative but has left me feeling somewhat dejected. All patients need to be told about lymphoedema before they start their treatment. It is a very important and common side effect of treatment. It is too much in the background.
That is about all for now.
Love.
Sylvia xxxx
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Hello Pam,
I have not forgotten you. I shall try to write after I have taken a break, otherwise you will be first priority tomorrow.
Love.
Sylvia xxxx
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Hello Pam,
I was interested to know that on Facebook they do a kind of polling of the members to get answers to a certain question. I think everything depends on what the question is. If it is a medical question that could be problematic.
I think on the bc.org forum it is useful to go to All Topics and see what bc.org is offering in the way of information. I do this from time to time. I also go to Active Topics to see what forums are at the top of the list on different days. I find that often some new members will click on a thread that has been out of date for a long time and answer the last post, which is way out of date! bc.org is very busy and vast! I like the fact that we have Moderators who keep an eye on things. We have to be wary of trolls who want to make trouble.
I was glad to know that you are going to get some blackout curtains for your bedroom. I have done the same with blinds for our bedroom. There is so much outside light in our modern societies, and it can be intrusive at night.
I would not take melatonin but that is just my own view. Melatonin is supposed to be made by a natural process in our bodies when we are sleeping.
I try to avoid negative people, but it is sometimes difficult. I love to have a laugh and I love to help people. I think the world would be a better place if we all asked what can I do for you rather than what is in it for me?
I was glad to know that you have been able to keep cancer off your mind, as I think the worst thing that can happen to us after cancer treatment is to let it possess us. We have survived the treatment and we know there are no guarantees so we just have to make the best of it and to live the day. That is all we can do in life in general.
I can understand about the tumour markers. If it is any help, my oncologist told me that she did not take them and that they were not reliable. Do not worry about tiny increases as they may well be less than the measurement error.
Everything I read about yoga says how good it is, even if a person only does the most simple exercises.
The cancer book that Mary mentioned is one of the best. I read it years ago now and I think there was a follow up. I think it is so much better to get information from reliable books than put yourself through torment looking up information on the internet.
I am focussed on the book Let's Talk Lymphoedema by Professor Peter Mortimer and Gemma Levine at the moment, because of the lymphoedema that suddenly occurred with me in mid October. Gemma is someone who has lymphoedema. I have felt very frustrated about it all and I did not like going back to the hospital to get it treated. I keep emphasising on the thread that lymphoedema is not given much attention with breast cancer, but it should be. Surgery, chemotherapy and radiotherapy can all cause it but certainly when I was diagnosed it was not mentioned as a side effect of treatment and that it can happen at any time. Patients need to know about this and the fact that it is considered a chronic condition because the lymph system has been damaged and lymph cannot flow properly through the body. The treatment is exercise and the compression sleeve if it is in the arm.
I hope you are having a good week.
Love.
Sylvia xxxx
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Hello Mary,
You are very quiet this week, so I hope all is well with you. I have been reading the book on lymphoedema and thought I would copy the main headings of chapter 4, entitled What Causes Lymphoedema? Briefly they are as follows:
Genes
Immobility
Old Age
Obesity
Accidental Trauma or Surgery
Cancer Treatment – it is the treatment of cancer rather than the disease itself that causes the problem. Radiotherapy, some types of chemotherapies and the surgical removal of even just one lymph gland can all contribute to lymphoedema.
The lymph nodes are removed during treatment because they act as filtering stations for everything that leaves the body's tissues via the lymph glands. This includes cancer cells, which, if gathered in sufficient numbers will reproduce rapidly and then spread (remember, I am taking these words directly from the book).
Under cancer treatment, the following was of concern to me:
"It appears likely that taxanes, a widely used chemotherapy agent, increases the lymph load by making blood vessels in the arm release more fluid. This can overwhelm a lymph system already weakened by lymph gland removal and so cause lymphoedema."
With breast cancer, arm lymphoedema is the most common, but, apparently, with lumpectomy fast becoming the standard treatment, the problems of breast lymphoedema have emerged.
Infection
Filariasis
Deep Vein Thrombosis
Varicose Veins
I hope you are having a good week. I am going through various moods because of this lymphoedema. I feel angry about it all and wonder why it happened so soon after the flu injection. I had no pain, so that rules out strain from the vacuum cleaner, so if it was not the flu injection which somehow made my body react as it is were a trauma, then it can only be wear and tear of the lymph system after twelve years of working as a damaged system, but without any apparent problems. I am so frustrated about all of this.
Hello to everyone,
I hope all is well. Hanieh needs everyone's support as she embarks on chemotherapy and Marias also needs that support. I am concerned that we have not heard from her in a while.
Love and best wishes to Mary and everyone else.
Sylvia xxxx
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Hi Sylvia
I am here, I am having an uncomfortable but busy week. Tuesday I had an appointment with the opthalmologist for an annual eye checkup. Here we have those every year after a certain age, I'm not sure what age that starts. In my case, I had the LASIK eye surgery about 12 years ago, and have had them regularly since. I now have small cataracts that will someday have to be fixed. Anyway, I had to have my eyes dilated, which they do with drops. I don't know if you have had it done, it's uncomfortable because you can't read anything or bear bright light, but it usually only lasts a few hours. Well, I had it done Tuesday and my eyes are still not back to normal. I called the office yesterday and they were very breezy about it, and said it was normal. I told them it wasn't normal for me, but didn't impress anyone! It's been difficult; when I left the appointment it was dark, so I had to drive home with all the headlights flashing in my eyes, and murky vision as well. The next day I had to drive again, an hour each way, in very bright sunlight. Last night was choir practice for Christmas, and we had to learn some new songs and focus on the unfamiliar words. By the time I went home my eyes were aching, burning and tearing and there was nothing to do but go to bed and close them. I think (hope) my pupils are a little smaller this morning and I imagine I probably strained them yesterday. Anyway, all that to say that's why I haven't been posting, looking at the white screen is a little off-putting.
It really brings home to me how I take my vision for granted, and probably a lot of other things too!
I hope to be normal(!) again soon!
Love, Mary
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Hello Mary,
Thank you for your post. I was very sorry to learn that you are having an uncomfortable week. It sounds as though you have had a stressful week with your eyes. I do hope they are much improved or better now. I can understand why you have not been wanting to look at your computer screen and have not been able to post.
Here in the UK we are entitled to regular eye check ups when we reach 60. They are pretty straightforward. We do have to pay for any spectacles we need and they are pretty expensive. As far as problems go, they are looking for cataracts and macular degeneration of the eye, as well as glaucoma.
I do hope you will be able to come back to the thread when you are ready.
It has been a strange week for me and I have had moments of feeling in pretty low spirits. I hated going back to the hospital and I am going to try to avoid regular visits. I am wearing a compression sleeve and trying to get used to it. It is about time lymphoedema got a lot more publicity. You will see in a recent post that I have written out all the causes of lymphoedema that I found in the book Let's Talk Lymphoedema. I do hope all newly diagnosed patients that read the thread and those going through treatment will ask their oncologists and breast cancer consultants questions about it. It also needs to be brought to the attention of GPs who have apparently very little knowledge of it. It is probably under-diagnosed and even, perhaps, not recognised, even though it is very common and not restricted to cancer.
The thread has been very quiet this past week and I sometimes feel disappointed that there are so many more views than posts. This should be a two way thing of giving and not just taking. It also has to be a two way thing of giving comfort and not just taking it.
I recently listened to Desert Island Discs (on the BBC, Radio 4). It is an interesting programme in which a well known personality is a guest and talks with the presenter of the programme about their life. They have to imagine they are left on a desert island and, in between talking, they choose eight pieces of music which are played. At the end of the programme they have to choose one of those to take with them on the desert island, along with a chosen book and one luxury. The programme is on at 11:15 am on a Sunday morning and repeated at 9 am on a Friday. It is well worth listening to. Recently I was Tim Martin who owns the Wetherspoon pub chain here. I picked up on what he said when he was talking about anxiety. He said that you should turn anxiety into activity, such as sport and exercise. I thought that was a good idea.
There have been no posts from Marias, so I do wonder what is happening. As for Hanieh, she has a lot going on and will be starting chemotherapy next week. We shall all need to give this young woman a lot of support and that is the same for Marias.
That is all for today. I hope to talk to you soon.
Love.
Sylvia xxxx
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Hello Mary,
I was just looking back over the past week to see how the posts were going and a lot of the group has been missing. This week it has been you, Pam, Hanieh, and I, along with Val, Sarah and Kath, that have posted, but the views have been zooming along.
On another matter, I think Theresa May and the awful bureaucrats in Brussels have done for with Brexit and done a con trick on us. They have made it look as though we are breaking free of the EU but in fact we shall still be in it. Nigel Farage tweeted something to the effect that is round one done and now we move on to the next humiliation. Theresa May has given in to Brussels and the insignificant DUP party, which is keeping her in power, is wielding too much power and have got a load of money for keeping her in power. How, in the 21st century, we can still be saying that Northern Ireland is part of the UK is beyond me!
All for now.
Love.
Sylvia xxxx
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