Calling all triple negative breast cancer patients in the UK
Comments
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Hello BernieEllen again.
I have just been reading the article that you submitted and edited on fatigue related to cancer treatment and post treatment.
There are so many things that can cause extreme fatigue that I feel it is quite difficult to know whether the fatigue is specifically related to cancer treatment. There is no doubt that you will feel fatigued during your treatment and that all you can do is rest and eat well to try to energise yourself. Going through cancer treatment is a busy time and an anxious one. You start off with trips to the hospital to get a diagnosis and you are sitting around in clinics, often busy and crowded, waiting for your turn. There is more sitting around in clinics waiting to have CAT scans, bone nucleide scans, ECGs etc. When you have surgery there are more trips to the hospital for the pre-assessment and all the bureaucracy on the day of surgery. After surgery you are suffering from the side effects of anaesthetics, pain-killing drugs and general trauma to your body from the surgery. You have to endure the stay in hospital, stuffy and probably germ filled wards, and food that is not really up to par. Six months of chemotherapy, backwards and forwards to the hospital, hours at the hospital hooked up to lethal chemotherapy drugs. Finally, daily trips to the hospital for radiotherapy. All this when you are feeling really below par. When it is finally over, you need to have a sigh of relief and start yourself on a journey of recovery, in which I think the most important ingredients are nutritious food, fresh air and exercise, plenty of rest and avoidance of stress, junk food, cigarettes and alcohol and anyone and anything that has a negative effect on you. All this is a very personal journey.
By the way, with reference to acupuncture, and I may be way off the mark here, but what about needles and problems with lymph nodes? I was told after surgery, mastectomy of the right breast with the removal of seven lymph nodes, that I should never have any injections in my right arm or have my blood pressure taken in the right arm. When I started my chemotherapy I was also told about injections. I had started being prescribed Iscador (mistletoe extract) by my consultant at the Royal Bristol Homoeopathic Hospital. This can be given as injections or taken orally. I was told not to have it via injections because of the danger of infection, so I took oral Iscador all through my cancer journey and for some time afterwards. The only reason that I am not taking it now is that the PCT will not fund it. You do need periods of rest from it and it is used for cancer treatment in Germany. I was just wondering about needles and acupuncture.
Please post is and let us know your experiences with cancer treatment and fatigue.
Bear in mind that ME makes you very exhausted and is hard to diagnose.
Best wishes.
Sylvia
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Hello BernieEllen yet again
Thank you for posting the article about the link between stress and cancer. With this article, as far as I am concerned, the author is writing for the convinced. I truly believe that stress plays a role in the development of cancer.
We have discussed this quite a bit on the thread and I think we all agreed about the role stress plays. I am convinced about the role that hormones play in this and about how cortisol levels rise with stress. There is so much that is stressful in life that we need to try to find a way to cope.
I think it is very true that life events, such as the death of a spouse, have very negative effects on the body. I think this is especially true of widowers who have not learned how to look after themselves and have left everyday chores to their wives. In our apartment complex we have watched quite a few elderly men deteriorate quickly after the deaths of their wives. With the widows, some seem to cope but others do not.
When Raymond and I look back over our lives, especially school days, when we were at Grammar Schools and really pushed, not to mention university. In the article I picked up on the stress related to tests. Working is stressful and life can throw all kinds of challenges at you that are stressful enough to throw your body completely out. The biggest stress factors are said to be divorce, moving home and bereavement.
I think we all now know that when lymphocytes become suppressed carcinogenesis begins.
There is a lot of useful information in this article.
Of course I cannot prove it but I feel that stress played a large part in the development of my cancer. If it took about four years to develop, then it probably started in 2001 when were selling our house and making plans to move to Devon. I am not good with change and found it all very difficult. I tend to think that my breast cancer developed more quickly than that and we have had discussions on the thread about TNBC and about how the tumour seemed to come from nowhere. To me it seemed that I was fine. I then strained my right arm doing gardening, trimming the hedge at my brother's with secateurs that were not working properly and then shortly afterwards I discovered a large lump that grew quickly.
That is about all for now. I hope you will find the time to read everything and post your comments.
Best wishes
Sylvia
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Hello everyone
I found the following article in the Daily Mail under Good Health entitled The amazing three-in-one cancer op. It rebuilds your breast, gives you a tummy tuck AND cures swollen, aching arms. The link to the article is:
It is all about surgery for lymphoedema and cancer.
Please read.
Also under Good Health on October 30th was an interesting article entitled Could eating too much junk food give you Alzheimer's? The link is:
http://www.dailymail.co.uk/health/article-2225026/Alzheimers-Could-eating-junk-food-disease.html
I hope everyone will have a good weekend and a non-stressful week.
Special hellos to Dulcie in Cheshire UK. I do hope you are still managing to read the thread.
To linali I hope all is going well. Please keep us up to date with your centre.
To Mumtobe I hope you are enjoying motherhood.
To sam52 and Maria_Malta I hope you enjoy the last couple of days of half-term.
To FernMF I hope you continue to make good progress.
Best wishes.
Sylvia
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Hello everyone,
I have just been checking through the thread as I like to keep everything in order and up-to-date. I have noticed that some people post in asking questions and someone usually takes the trouble to answer and offer information or help and then there is no response. I feel that it does not require much effort to say thank you. In life you have to give as well as take.
Best Wishes, Sylvia.
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Sylvia, as always, I so value your insight and the tremendous research work that you do for us.
I truly believe that stress and our toxic life style are major contributions to the accelerated advance of cancer.
Unfortunatly, I also believe it is too late to turn the tide. Materialism, consumerism and the drive to succeed has such an adverse effect on our well being.
For me, being Bipolar, fatigue as a part of my life is something I have to fight against on a daily basis. The normal advice does not work. The cancer treatment not the diagnosis has exasperated this.
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Hello BernieEllen
Thank you so very much for your post and your kind words of appreciation. I do value your words.
I do agree with you about stress and our toxic lifestyle and their contributing factor in the development of cancer. I think we can try to control these two factors only individually and hope that each individual effort will grow into a mass effort. I am a great fan of the American intellectual Noam Chomsky and have read some of his political books. The latest one was a very slim volume in which he is interviewed by the Occupy Movement in the US. In this book Chomsky said that you get results only through mass movements of the population against those in power. What we need with cancer is a similar movement that will encourage people to take control of their lives and boycott things such as junk food and poisonous products etc. As for the environment, with all its toxins, that is even more difficult.
I suspect that you are right and that it is probably too late to turn the tide as the western world is buried in materialism, consumerism and this drive to so-called success. We need a much more simple life.
I was very interested to know about your Bipolar and the part that fatigue plays in it. I think you must be doing a good job fighting against it as you certainly make a major contribution to this thread, despite your fatigue. I am even more impressed knowing that you are dealing with fatigue from Bipolar and fatigue from cancer treatment. You have my greatest sympathy. Do you do anything in particular to try to help you with your fatigue? I know that you are involved in many things and I always think of you as very energetic.
It was pouring with rain early this morning when I opened up the blinds, but there is a little bit of sunshine now.
Take care of yourself and thank you for your great effort on this thread.
I was wondering whether you have been to the hospital about the lymphoedema problem you said you had.
I do not know whether you saw my post in which I was asking whether you knew what had happened to bak94? Something happened on the Calling all TNS thread and she said she was getting off the thread and deleting her posts. I was concerned about this. If you are in touch with her, please give her my regards and tell her she is welcome to post here any time. She was valuable on this thread and I admired the way she got through treatment the second time around.
Have you any idea why there seems to be so much TNBC being reported on the Calling all TNS? I get the impression that it seems like an epidemic. On our own thread here there do not seem to be many new diagnoses and I do not know whether there are not so many cases appearing in the UK etc., or whether people are just going on the cancer journey alone.
Enjoy your day.
Sylvia xxxx
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Almost five weeks past last chemotherapy. All seems near normal. We have the 10-year old and 1-year old grandchildren this weekend. Fun fun fun.
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Hello FernMF
Thank you for your post. I was so glad to know that five weeks past chemotherapy all seems near normal. This is good news and I hope this will help others, newly-diagnosed, and faced with decisions about their treatment, especially chemotherapy, to know that they can get through treatment. I think it is important on the thread not to frighten the newly-diagnosed about treatment. I have felt concern, reading some of the threads, that some posts may be frightening new patients about treatment and making them anxious. This is not what support threads should be about.
I can imagine you have had a hectic time with a 10 year old and a 1 year old grandchildren.
It has been half-term this week here in the UK with schools, colleges and universities all on a break. It has been manic in the towns. There has also been extra activity because of Halloween. Fireworks have been going off for the past few days. Tomorrow November 5th is Guy Fawkes night, with more fireworks and probably some bonfires. I do not know why we celebrate this day. It is a remembrance of a catholic plot to blow up the Houses of Parliament under James I in 1605. If you want a bit of history, look at the following link.
http://en.wikipedia.org/wiki/Guy_Fawkes
When we were growing up as children we used to make stuffed effigies of Guy Fawkes, prop them up on street corners and ask for “Pennies for the Guy”.
There is no nation as weird as the Brits!
I hope you have a good week.
Best wishes.
Sylvia xxxx
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Hello everyone
I hope you are all having a nice Sunday.
Since there has been some mention of alternative treatments, I thought I would post what I took when I was first diagnosed in June 2005.
I walked away from orthodox treatment for three months, convinced that I was going to die and that I did not want to go through mastectomy, chemotherapy and radiotherapy. I want to emphasise that this was very unwise of me.
I asked my consultant breast surgeon to refer me to a homoeopathic doctor who dealt with cancer patients and she did. I stayed with this doctor, who made it quite clear to me that I needed to have orthodox treatment, but that she could help me at each stage, and she did.
This is what she prescribed. In September 2005 I took Carcinosin 30c along with Calcarea silicata. This was to fight the cancer. I also took oral Iscador.
By October I had gone back to the consultant surgeon, agreed to treatment, saw the Oncologist and prepared for pre-surgery chemotherapy. To help with any nosebleeds that can be caused by chemotherapy, the homoeopathic doctor prescribed Millefolium and I had only a slight nosebleed once.
All through my chemotherapy I continued with twice daily doses of Iscador.
During my five days stay in hospital I took Bellis perennis LM3 to help with healing. I had virtually no pain or problems after surgery and routinely refused pain killers.
During radiotherapy I had X-Ray and Belladonna and Arnica to help with any healing. I had no problems from the radiotherapy.
I continued to go the Bristol to see the doctor at the homoeopathic hospital and had quality appointments, in which I had useful discussions and I felt the doctor got to know me.
I was still seeing her in September 2007 and because I was feeling stressed and anxious about a lot of things, she gave me Conium maculatum in a 30c and then a 200c and then 1M.
I think I then had a rest from Iscador and it was felt I no longer needed to go to the hospital, but could go back on Iscador when I wanted to.
In 2011 I tried to go back on Iscador but the Primary Care Trust was no longer funding it.
We all have different views about homoeopathy, but for me it seemed to work in that I had no serious problems during all of my treatment. However, I do not think that you can get through cancer without orthodox treatment.
I also took, of my own initiative, pine bark extract (Pycnogenol) which is supposed to boost the immune system, as well as bitter apricot kernels, which I am still taking and are supposed to kill cancer cells.
I am posting this just out of interest and would be interested to know if anyone else feels they were helped by homoeopathic medicine.
I made up my own mind about all of this and did not belong to any support group during my treatment. I discovered bc.org in 2009 when I was looking for information about hyperparathyroidism and a possible connection with breast cancer and met sam52.
That is all for now.
Thinking of you all.
Sylvia
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Good evening. Sylvia
The unidentified illness Janette had was when they thought she had. MDS. She had very severe headaches at the time (Janette always suffered headaches) and the Haematologist had a CT scan of her head done. If only they had done the whole body they may have found the cancer in her breast.
I haven't done any surveys about Europe. It isn't really an issue here. Even in the Republic of Ireland, which is suffering greatly I don't hear much talk of leaving The EU. People propose leaving the Euro but I would guess that is a minority.
Michael
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Sylvia I forgot that you asked about Janette's experience with acupuncture. She was told that she could be built up using acupuncture and she went for a few sessions but my darling Janette had no patience whatsoever, she once decided to read "The Davnici Code" but stopped at the end of the first page becasue it wasn't getting to the point, so I guess we never got to know if it was any good.
I noticed in a post today there was reference to building up the immune system. In lymphoma circles that is considered a bit of a no no. This is because B cells or T cells are being produced and not dying so start to build tumours. Massage is also considered bad because it is thought that it is helping to distribute the lymphoma around the immune system.
Going back to my surveying, the issue that heats people up in Northern Ireland is parting with money. We don't pay water rates here and 5 years ago it was announced that they were to be introduced. There was uproar, Catholic, Protestant, Jew, Muslim, Hindu, Buddhist and Presbyterian were united. "sure it never stops raining here, imagine paying for water, sure the stuff is running in the street." You get the idea. The can has been kicked doen the road.
Michael
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Our story begins at the Olympics, specifically the wrestling event. It
is narrowed down to the Russian or the American for the gold medal.
Before the final match, the American wrestler's trainer came to him
and said, "Now don't forget all the research we've done on this
Russian. He's never lost a match because of this "pretzel" hold he
has. Whatever you do, don't let him get you in this hold! If he does,
you're finished!"
The wrestler nodded in agreement. Now, to the match: The American and
the Russian circled each other several times looking for an opening.
All of a sudden the Russian lunged forward, grabbing the American and
wrapping him up in the dreaded pretzel hold!
A sigh of disappointment went up from the crowd, and the trainer
buried his face in his hands for he knew all was lost. He couldn't
watch the ending.
Suddenly there was a horrible scream, and a resounding cheer from the
crowd. The trainer raised his eye just in time to see the Russian
flying up in the air. The Russian's back hit the mat with a thud, and
the American weakly collapsed on top of him, getting the pin and
winning the match.
The trainer was astounded! When he finally got the American wrestler
alone, he asks, "How did you ever get out of that hold? No one has
ever done it before!"
The wrestler answered, "Well, I was ready to give up when he got me in
that hold, but at the last moment, I opened my eyes and saw this pair
of balls right in front of my face. I thought I had nothing to lose,
so with my last ounce of strength I stretched out my neck and bit
those babies just as hard as I could. You'd be amazed how strong you
get when you bite your own balls!"0 -
Michael, thank you for saying not to massage with LE. Everyone tells me that I should. Will find out more.
Bernie
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Hi,
I have had a busy and challenging week and have just caught up on all the interesting and thought provoking info posted by Sylvia, BernieEllen and Michael.
Leigh started the first step on the journey to transition and sadly my B in Law passed away on Tuesday.His funeral mass was lovely and Luke kelly songs were played at the crematorium. A difficult time with lots of incidents, some so sad and others stressful or hurtful. I managed to loose my purse at the endriconolgy clinic but thankfully it was handed in. Just shows you how you stop functioning when you are worried, distracted or downright scared.
I was very interested to read re stress and cancer in particular the piece on personality types. It has always struck me that alot of the women I have come across at the centre are women who would either be regarded as strong or extremely unselfish putting others first, in their home lives or working lives. BUT on getting to know them and going on my own experience they can be strong advocates for others, selfless and committed and then when it comes to themselves they find it so difficult to ask for help or even speak out or defend themselves. Just an observation, it was so easy for me to take on other peoples battles in my role as a union rep but when it came to myself I couldnt be assertive and perhaps kept all that frustration locked up inside.
I must agree with Bernie re fatigue,I have also come across many women with it, some because of their chemo regime. I find that I feel drained if I have a busy day. There is this feeling deep inside of utter exhaustion. Sometimes at the thought of a busy time ahead.... even enjoyable things and I have had to cancel outings with friends.
Perhaps it is psychological too. I find that meditation and the counselling helps to put it into perspective. It is encouraging to see that it is been taking seriously as it can interfere with your quality of life.
Thanks for all the info and all the food for thought. It makes me feel that there are always doors opening and gives my head something to do.
I have my next appt with the lymphedema nurse on 14 nov and she does gentle lymphatic massage and drainage. I am feeling bruised and sore right down my ribcage and must ask is this also slight truncal lymphedema.
Cookery this week is a mini Thanksgiving lunch followed by sleep techniques, I hope that I last this time. All the food makes me sleepy anyway!
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Hello Michael
Thank you for your posts. They are always interesting. As you say, it is a pity that a CT body scan was not done, but try not to dwell on what might have been as it will prevent you from moving forward. I was interested to know that it was thought that Janette might have had MDS, as one thing that frightens me about the standard treatment for breast cancer is that in the long term it may cause leukaemia. I put it out of my mind by telling myself that I seem alright for the moment and have gained years. That is how I live post treatment – alright today, see what tomorrow brings.
I was interested to know that there is not much talk of Europe in Northern Ireland or even in the Republic. In England there is a lot of talk about it and I think a majority of people probably want a referendum on Europe and whether we stay in or get out. The politicians talk about it a lot but I do not think they will ever give the people an in-out referendum. I think they fear the result. After all, back in the seventies, the referendum was about a common market not this union that is very undemocratic.
I was interested to know about Janette and the acupuncture experience. I am getting a picture of a very energetic person and I can see that acupuncture would probably get on her nerves. I would never try it and I am not really convinced about it. I think a lot of it may be in the mind.
I had to laugh about Janette and the Da Vinci Code. I also like people to get to the point. I find politicians real windbags. They pontificate, evade the question and rarely get to the point.
I think we have to be very careful about lymphodema and massage. I was interested to know that this is not recommended with lymphoma, and I can understand that, because it is a cancer of the lymph system.
With breast cancer, there are lymphodema clinics at hospitals to deal with problems of swelling arising from surgery, especially where lymph nodes have been removed. The removal of lymph nodes damages the normal flow of lymph around the body and this is helped either by wearing a special sleeve and/or manual massage. It is easy to learn how to do it. It is a gentle massage of upward movements from the hand to the top of the arm and then outwards across the chest area. I think exercises such as raising the arms upwards and outwards also helps. I know that the day after my surgery, the physiotherapist came and gave me exercises to do to keep the arm and lymph moving. Lymphodema can come on at any time.
As for the other massages, such as aromatherapy, reflexology and Indian head massage, they are offered as complementary therapies at some charities such as Hospiscare and at hospitals. I think they are mainly for relaxation and to keep you busy and your mind off your cancer.
I did have a good laugh about your survey and the fact that in Northern Ireland people do not like parting with money. I was amazed to learn that you do not pay water rates in Northern Ireland, as we have always paid them in England. At the moment we have a two tier system with people in older properties paying a fixed water rate and those in newer properties having meters. People here also have a funny attitude to water and those on fixed rates, I think, tend to abuse the use of water. We have a meter and we pay for the water that we use plus the usual charges for sewerage etc. I believe it is common-sense that you should pay for what you use. We do that for gas and electricity, so why would we not do it for water? In Devon we have one of the highest payments for water and in our two-bedroom apartment we pay £68 per month, which we find a lot. We also pay dearly for gas and electricity in Devon.
Have a good week.
Best wishes
Sylvia
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Hello Bernie
Thank you for your posts. Be careful about lymphodema. Michael said massage was not advised for lymphoma patients. With breast cancer, there are special lymphodema clinics at the hospitals. Some patients need treatment at these clinics if their lymphodema is bad. You can have an initial appointment with a lymphodema nurse, and if it is in the hand and arm she does certain measurements, and according to those she will decide whether you need treatment at the clinic, whether you need to wear a special sleeve or whether you can do exercises on your own.
Hope all goes well this week.
Best wishes
Sylvia xxxx
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Hello linali
Thank you for your post. I need to take a break now so I shall answer it later today.
Best wishes
Sylvia xxxx
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Linali, sorry for your loss. May he Rest in Peace.
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Hello linali
Thank you for your post. I was glad to know that you found the posts from BernieEllen, Michael and me interesting and thought provoking. We do want a thread that gets the little grey cells working.
I was so sorry to learn that your brother-in-law died on Tuesday and I am sending you sincere condolences on behalf of everyone on the thread. This disease is taking its toll on too many people. I was glad that you had a lovely funeral service and that you enjoyed the songs. I do not know anything about Luke Kelly. What kind of songs does he sing?
It sounds as though you have had a very difficult time, so try to relax and above all take extra special care of yourself.
I was glad to know that you found your purse and that someone was honest enough to hand it in. I was wondering what is happening at the endocrine clinic. I apologise if I have missed something. It is certainly true that when you are worried, distracted or frightened, that you stop functioning properly.
I do think there is a connection between stress and cancer. After all, stress affects our hormones and the immune system and makes them malfunction. I think the personality type also plays a part and it is very difficult to change your personality. Yesterday, Raymond and I went through the personality traits, ticking off what we thought applied to us. To make it more challenging, we each said how we thought the characteristics applied to the other!!! It seemed to indicate that I was more type A and Raymond was type C, but not completely. According to Raymond, he thinks he was more likely to develop cancer, whereas I was more likely to have heart disease. However, if you look at the stress factor, I think I have had more stressful incidents. It is difficult to sum it all up, but although I am more outgoing than Raymond, I am also very selfless and have always put everyone else before myself. When I was diagnosed with breast cancer, one of the first things I learned from just one session of counselling and very useful conversations with the doctor in Bristol, was that I had to learn to say 'no'. I have found this very difficult and have spent a lot of my life looking after others and doing things for them. How do you and your husband fit in?
Another interesting thing we could do on the thread is to ask others how they see us. For example, I see you and Bernie as very active people, getting involved with things and trying to do the right thing.
It is very interesting to read that you could be assertive for others in your role as a union rep, but not able to be assertive for yourself. I do hope that breast cancer has made you more assertive, because you do have to be your own best advocate and you cannot let the system take control of you or any of the so called 'experts' talk down to you.
I do not doubt that chemotherapy causes fatigue, that it can be long lasting and that it affects people to varying degrees. I think the degree of fatigue probably depends on the state of health before the cancer treatment and how you conduct yourself after treatment. There are so many risk factors with the development of cancer, some we can control and some we cannot, so it is quite difficult to make complete adjustments to ones lifestyle in an attempt to keep recurrence, metastases or a new primary at bay. I think that a person has to judge their own level of endurance and adapt their daily living accordingly.
I do hope all will go well when you go for your next appointment at the lymphodema clinic. Are you benefiting from the lymphatic massage and drainage. You are right to ask about the feeling of bruising and soreness at your next appointment. It is best not to leave anything to chance.
I hope you enjoy your cookery and the mini Thanksgiving lunch. Let us know what you cook as well as what you learn from the sleeping techniques.
Let us keep challenging our brains with interesting posts and thought challenging ones.
Thinking of you and thanking you for your great contribution to the thread.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I forgot to say that I bumped into a lady from my neighbourhood today and she looked really well. She was diagnosed in 2006 with hormonal breast cancer and I counselled her through it so she would not be afraid. She had two lumpectomy operations and radiotherapy. After that she was on Tamoxifen and then Arimidex. She was discharged from the hospital last year after five years. I am posting this to encourage everyone and to tell you that you can do this.
We were treated at the same hospital. I was diagnosed the year before her and still have check ups. I think this is because I had non hormonal TNBC.
I also bumped into one of the Hospiscare nurses who visited me during my treatment.She told me she was very busy as there were more and more cases of cancer. We talked about stress, but she still thinks it is the luck of the draw.
What do you think?
Best wishes,
Sylvia.
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Sylvia and others: an update from your TN friend in WV USA.
I had a scheduled appt with the surgeon last week, and his office called and cancelled - the reason (this will delight you) was that "trick or treat" night was changed from Tuesday eve to Thursday eve because of bad weather on Tuesday eve - and thus, the surgeon, who wanted to go trick-or-treating with his four children needed to move all his later afternoon appts. I guess I can't feel badly about that - I had no concerns for this appt - THE SURGEON scheduled it . . . so, it's been moved to January. I really don't know what a follow up surgeon appt is about anyway? With BMX, what's to check?
Yesterday, I had my 5-weeks from last chemo check with the oncologist. My blood counts were lower than the "low" range, but he didn't seem concerned . . . he said chemo's effect is that, and that I will slowly build them back up. I am slightly "fatigued"/tired in the evenings . . but am walking 3 miles in ~ 45 minutes with my husband about 4-5 times per week, working full time, and doing o.k. He has ordered up a "base-line" CT scan. I was previously scheduled for one by the cardiologist who is following a heart condition . . . so, the oncologist's request trumps the cardiologist's - but they are going to "share" the results so that I don't get radiated twice in 30 days time. How thoughtful of them!
The "other thing" that was enlightening, or horrifying was the itemized statement from the oncologist. I had received NO bills from them and no EOB's from my insurance carrier throughout the entire chemotherapy journey. The statement totaled $44,000. That's ~ $11,000 per treatment. Luckily, my insurance carrier is FABULOUS. My share of insurance coverage through my employer is ~ $180/month. Thank GOD for this insurance coverage . . . . Who can possibly afford $4,600 taxotere treatments and $4,800 neulasta shots? AMAZING! HORRIFYING!
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Greetings to our lovely TN friend in West Virginia USA.
Thank you for all your news. I can see that with the hospitals you may have some of the same problems as we have. The medical service sometimes seems to be run for the convenience of the medical staff and not for the convenience of the patients.
It seems wrong that you now have to wait until January for an appointment.
In this country there are always follow-up appointments when you finish your treatment and during every stage of your treatment, so you would expect to see your oncologist and your breast cancer consultant. After that it is standard practice here to have three-monthly check-ups, alternating between your oncologist and your breast cancer consultant. After a couple of years you go to six-monthly check-ups, again alternating.
After finishing treatment we have a CAT scan and a bone nucleide scan to make sure all is clear.
I do hope your blood counts will gradually increase and return to normal. It is normal for you to be tired or fatigued at this stage. You are also doing a lot of walking and that will proabably make you tired so soon after chemotherapy treatment.
I was glad to know that your cardiologist and oncologist have come together about the CAT scan. You do need to see whether the Taxotere has had an effect on your heart that did not already exist with the pre-existing heart condition.
I was very interested to learn about the bill for your treatment. I think the statement for $44,000 is about £33,000. I know that the taxanes (Taxol or Taxotere) are very expensive. I remember back in 2005 chatting with the chemotherapy nurses and I asked them how much my chemotherapy treatment was costing the National Health Service (NHS) and they told me that it was about £22,000 at that time. We are so lucky to have a National Health Service, funded by taxes and free at the point of use to patients. It is one less thing to worry about, although, at the time, patients were having to fight to get the taxanes as well as to get Herceptin.
You are lucky to have a good insurance carrier. Your monthly payment of $180/month is about £120/month and that would be quite a lot for ordinary people to pay in this country, given the low salaries that most people earn.
When I was going through treatment I do not think people were being given Neulasta shots. I was certainly not offered them, but I had no problem with low red or white blood cell counts.
I would love to know, FernMF, what happens to patients in the USA who do not have insurance and do not qualify for Medicare and will Medicare cover the high cost of cancer drugs? What happens if an insured person loses their job?
I think the drug companies are making too much in the way of profits.
Have you been taking much interest in the Presidential elections? It has been headline news here for months.
That is all for now.
Best wishes from this funny old country known as the UK.
Sylvia xxxx
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Thanks. Sylvia. I voted for the loser and am really disappointed. I do not know how un-insured cancer patients do in the u.s. I know children are generally covered for health care (paid by tax $$) and prenatal and ob/gyn care is given to un-insured mothers. Medicare kicks in at age 65 but only for hospitaluzation. Senior citizens have to buy extra coverage for all other health care.
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Hello FernMF
Thank you for your post. It is interesting to know about the health care system in another country.
Keep well.
Sylvia xx
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Hello adagio
Thank you for your PM. If you look at this thread and look at a post I addressed to you on November 1st, you will see that I gave a very detailed account of my treatment.
Wishing you well as you embark on this treatment.
Best wishes
Sylvia xx
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Hello everyone,
There is not much posting going on here, so I suppose no news is good news.
There is no one now going through treatment and no newly diagnosed patients coming on for comfort and help.
I am wondering whether this UK thread has now served its purpose. What do you think?
Is there now enough information out there that this thread is no longer needed.The Brits do not seem to be posting.
Let me know what you think.
Best wishes, Sylvia.
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sylvia - so sorry I somehow missed your very helpful post to me on November 1st. I just read it and I am so encouraged by it. My oncologist has suggested dense dose of AC/Taxol starting November 20th. I am coming around to chemotherapy since I cannot really see much alternatives out there. I am extremely interested in complementary therapies alongside the conventional. I already take a long list of supplements recommended to me by a naturopathic oncologist who says they work in synergy to the chemo. I am going to read about "Iscador" - I never heard of that before! I am also considering acupuncture since I have heard it helps with the neuropathy side effect of Taxol.
Fern - thanks also for telling me your story - so happy that you are now cancer free!
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Sylvia - I have just found the site, so I am still learning how to navigate. So far your posts are amazingly helpful to me. Why restrict yourself to only UK triple negatives? We are all in the same boat and need all the help we can get.
Did you ever hear of using Melatonin for its anti-cancer properties?
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Hello adagio
Thank you for your posts and I am so glad that you found my posts. I was really glad to know that you found my posts helpful as this is why I started this thread over two years ago. Although I started it because I thought TNBC was in the dark ages in the UK, I made it clear from the beginning that everyone was welcome to post and quite a few Americans have gone through their treatment posting all the time on the thread, relating their experiences, explaining how they were feeling and receiving support, comfort, information, encouragement and tips as they went through their cancer journey. FernMF is one of those and she is now getting on with her life and supporting others on the thread.
The chemotherapy that your oncologist has suggested is the same as a lot of women on these threads have had. Adriamycin is the brand name for doxorubicin and Cytoxan is the brand name for cyclophosphomide. Taxol is the brand name for paclitaxel. It belongs to the taxanes group and the other one is Taxotere, the brand name for docetaxel. From your post it looks as though the plan is to give you all three drugs together. Is that the plan?
Here in the UK patients often have Ellence, the brand name for epirubicin, which is the same kind of drug as doxorubicin. Everybody seems to have Cytoxan, cyclophosphomide, and one of the taxanes.
I had epirubicin with cyclophosphomide for three months in three-weekly cycles, and then docetaxel for three months in three-weekly cycles.
I cannot say that I was really unwell during that time but drugs affect different people in different ways and I had never been ill before the cancer diagnosis.
The treatment is carried out at the hospital and is done intravenously through a cannula placed on the top of the hand and the drugs are administered through a drip. All this is painless. It all takes quite a long time, so you have to prepare for a long day. When the treatment is over you can go home.
Your oncologist will probably talk to you about having a port installed to administer the drugs, because sometimes the drugs can be hard on the veins. I did not have this, but a lot of women do.
Because I had a large tumour I had the chemotherapy before surgery for a mastectomy.
I hope all this will help for a start but if you have any more questions before your chemotherapy begins, please ask and I or others on the thread will be able to help.
I do not think there is any alternative to standard treatment to bring breast cancer into remission.
I was most interested to know that you are interested in complementary therapies alongside the conventional.
Please post and let us know what supplements you are taking that were recommended by a naturopathic oncologist. I would be really interested to know what they are and how a naturopathic oncologist works. My breast cancer surgeon was quite happy to refer me to a homoeopathic doctor and I took what she prescribed throughout my conventional treatment. You will find all the details of what I took just a few pages back on this thread. If you cannot pinpoint it let me know and I shall find it and post it again. As for Iscador, it is made from mistletoe and is used in cancer treatment in Germany. It is an immune booster. It can be taken orally or injected. I took it orally as I was told that it was not prudent to have injections during my chemotherapy treatment.
I am very interested in Canadians, as I lived in Canada for 17 years.
Everyone, Canadians, Americans, Europeans and any other nationality are welcome to post here. Breast cancer treatment can take a long time. It can be a long and tiring journey and it is easier if you are supported through it by those of us that have already been through it.
I do know about melatonin and I know that some patients on this forum take it. It is not available in the UK. I have read about a lack of melatonin and the development of breast cancer due to light exposure at night. We are all advised to sleep in completely darkened rooms so that the hormone, melatonin, forms during our sleep. Night workers are said to have a higher risk of breast cancer because of working in light during the night when they should be sleeping. You will find we have a lot of information on this thread.
Keep looking forward and take care.
Best wishes
Sylvia xx
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Sylvia - I am having 4 treatments of AC followed by 4 treatments of Taxol. I do not have a port - it was not suggested to me by the oncologist although I did ask about it - I have decent veins, but I hear the drugs can harm them. Have you ever gone to a site for "Breast Cancer Treatment Outcome Calculator" - I am trying to figure it out fo my own prognosis and outcome with or without chemotherapy.
I didn't know about sleeping light being a contributing factor in cancer - perhaps I should make some black out curtains.
I am gone from my computer for 4 full days now since it is a long weekend here and we are going away. So if you don't hear from me, you will know why!
Thanks for all the information - I am sure I will have more questions sooner or later. Which part of Canada did you live in?
One last question - have you heard of the metformin trial - I have been offered that after my treatment - haven't read up on it yet, though.
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