Calling all triple negative breast cancer patients in the UK
Comments
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Hello Dulcie
Hope you get your CT scan this week and that the news is good.
Thinking of you
Sylvia xxx
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Hello Michael
I was glad to know that you feel you are learning quite a lot on the forum and the thread. I was also glad to know that you find it thought provoking. I find that there are all different kinds of threads here with people posting, coming up with all different bits of information that they have found or tips for helping to get through treatment and, of course, lots of support. I do hope that all of it will be useful in setting up the charity.I do not know if there are help lines that you can call and speak to someone specifically about triple negative breast cancer and who can speak about it from experience. If anyone reading the thread knows of any such help lines, it would be helpful if you could post and let us know. I do remember a long time ago now, writing to Cancer Research and perhaps Break Trough Breast Cancer, but the replies are fairly standard. The staff are kind but you do not learn that much. I did phone the Macmillan Nurses when my uncle was ill. Again, there was a lot of sympathy and support, but not much information that I did not already know.
About the capitals TNBC, I do not know whether it is good or not to use them. When I first started looking at breastcancer.org, quite by chance, in 2009, I was really astonished at all the abbreviations used and had to get tuned in to them. I am not one that naturally uses them. Having done two degrees, one specialising in French and the other in English, and having taught both as second languages, I am rather strict on grammar!!! I found it interesting to learn that some people in the lymphoma community refuse to use capitals for their disease in order not to give importance to the disease. I suppose that is one way of looking at it. I think I would be in the group favouring capitals in order to give prominence to all these dreadful cancer diseases. Remember that cancer is still often referred to as the Big C. We need it out in the open.
Organising a way in which people can phone up for information sounds like a good idea for a charity. You would need to be careful about who is manning the phones, because you could run foul of the medical profession. On breastcancer.org we are not supposed to give advice. I think we can say only what we would do if we were in a certain situation and relate our own experiences. We have to be aware that we are not oncologists, consultants or doctors.
I would have no idea how to go about setting up a charity, but would be most interested to follow, on this thread, how you go about it and help if I can. Someone like Mike Tomlinson, the husband of Jane Tomlinson, might be able to help you. I think he and his wife set up one and I think he has carried it on after her death. Another person who might be of help is Chris Woollams of CANCERactive. I think he set up this charity in memory of his daughter Catherine, who died of a brain tumour, I think, in her twenties. If there is anyone reading the thread and has experience of setting up a charity, please let us know. Such a charity that Michael wants to set up will be of benefit to all of us that have been diagnosed with TNBC.
I hope all goes well on September 22nd.
I was interested to know that when Janette's breast cancer returned it was found to be oestrogen positive. Do you know whether it was progesterone positive and HER2 positive as well? I have read of these different receptors when a breast cancer returns. There seems to be no rhyme or reason to it. It is very mixed and you can have bits of DCIS as well, or so I have read. I find it interesting too that the cancer cells themselves mutate.
The smoking probably would not have done Janette any good. We get all kinds of information about cancer causes and cancer risk. I do know of women who use smoking as a way of keeping slim, but I think that is most unhealthy.
I was most interested to know a bit about your family history. It is so important to talk to our family members about health problems in the family while they are alive. Families need to know what illnesses are in the family. These women dying young could have died of breast cancer.
I had to chuckle at what you said about your own mother being knocked down by a motorbike outside Harrods. It shows that you have a good sense of humour. Your mother certainly lived to a ripe old age. We all have bits of information about our families' health problems, but not enough.
On my mother's side there were nine children, two girls and seven boys. My maternal grandmother died of advanced breast cancer at 70 in 1955, but of course, at that time, there would have been no information about receptor status. Her two daughters, my mother and her sister, had no cancer, but of the seven brothers, three died of cancer and the last surviving one has cancer. Of the other three, one died aged 13, the other was killed in WWII in his twenties and the other one died at 90 with no cancer. I gave this information to a genetics nurse but she said mine was a rogue case! On my father's side there was just my father and his sister. The mother died giving birth to my father and there was no cancer with my father and his sister. I know nothing about my father's father.
Your spelling seems fine to me. I sometimes think the spell-checker does not know how to spell!! However, we have to remember we are dealing with American and English spelling. My husband tells me that a lot of people forget to switch on the spelling that they want.
That is about all for now.
Best wishes
Sylvia0 -
Hello sam52
It was nice to hear from you and was glad to know you got back home safely from your weekend visit to your father. I can sympathise with all that you have to do and I hope that your two brothers will try to do their share. It is often the females of the family who end up doing most of the work. They should remember that you have been through a life-threatening illness, that you are on your own and that you have a son who requires your help, and that stress and over-doing things is not good for you.I was so sorry to hear that you had to get up early this morning to take your cat to see a specialist near Luton. I do hope by now you have been there and got back home safely. What kind of strange symptoms has he been displaying? I do not know anything about cats but the howling is probably a sign of pain. Please let me know what happens.
I do hope you will manage to get some relaxation during your school holidays.
Have you any special plans for the holidays? Are you interested in the Olympic Games? What did you think of the opening ceremony?
Do you think this country will ever get back to "normal"? 2012 seems to come over as one big party, which is a bit odd considering that we are in a double dip recession and that there are untold numbers of children with swollen stomachs due to lack of food!
Take care.
Love
Sylvia0 -
Hello FernMF
I know you will be feeling nervous this evening and just wanted to say that we are all thinking of you and wishing you the best.You can get through this. Make sure you drink plenty of water and get plenty of rest.
With best wishes
Sylvia0 -
Hello Sylvia x I hope you had a good weekend...and the ladies and gent that post here x
We both went to my radiation appt at lunchtime ..and had to wait nearly 3 hours to be seen ..with no explanation..when we finally saw the top man himself..he read in his 'papers' that i was quite well read too! So he didn't explain much too me! but said i can choose what time of day i go for it and transport will be arranged by them.......
I then went back to the breast clinic and had my wound site drained again..and i have 'cording' now..even though i only had one chemo in that arm?
...So if the lung nodes are not cancer..i will be having 5 weeks of radiation..but...he wrote down many things that could happen to me..including...small risk of damage to left lung..heart..ribs..compromised healing on wound sight..plus something else nobody can decipher...but it's 1 in 10,000..gosh! I must ask what that is!... so OH goes tomorrow to see lung specialist...he used to be the thyroid specialist...no wonder i get confused...
Then for me it's the big day on Wednesday....i do hope all these appts for OH find out very soon just what is going on!
Thank you for the PM Sylvia...most appreciated..I might take my troubles off the board at times and PM you instead..
Bless you all..
Dulcie xxxx
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THANKS SYLVIA - did a day at work (post vacation - I was slammed for the most part - and thankful for it) . . now on to home . . took the first steroid pill . . metal mouth! . . . going home to a nice dinner, load my mp3 player, get my books ready, and my comfy socks . . wearing my FIGHT LIKE A GIRL T-shirt tomorrow and sweat pants - FLAT - no fake boobs - - who cares, right? My hubby is a SAINT and so very supportive, and my health insurance is paying 100% now that I have completed my total out-of-pocket . . . so, GOD IS GOOD - things are not terrible, I am healthy, I am strong . . . . .
LOVE LOVE LOVE the flowers too!
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Good evening Sylvia
I meant to ask the other day about parathroidism. How does that manifest itself and why is it thought that it maybe linked to breast cancer?
I cannot really be sure about the hormone status of Janette's cancer when it returned. Everything was such a blur and I was burying my head in the sand. I realised with each passing day hope was running out and I was not coping well. They did throw a drug into the mix, I think it was called Amidax? But they stopped it when they found that Janette was still pre menopausal.
Each time Janette started capcitibine she would get an infection and they would stop the drug. I used to think 'she is dying, giving her the drug cannot make it worse'. Anyway enough of that, this isn't a bereavement support group.
As far as setting up the charity; the setup process is not a problem, I have it under way. My concern of where I may fail is keeping up momentum. I will keep my first year targets modest and hopefully as people hear of the cause it will start others fund raising.
I have been in London since Saturday and have passed through Stratford a couple of times. There is no sign of mayhem. I am seeing more Olympic officials than spectators. Yesterday London was very very quite. There are lots of people on hand with information and help.
Michael0 -
Good morning to everyone.
Sylvia, I wish my garden was looking that good.
Michael, I am the administrator for the committee of our Charity Motorcycle Run that takes place every year to raise funds for the Solace Centre in Waterford. It is a Cancer support and Care unit solely funded by donations and is the only place of it's kind in the South East of Ireland. My duties include responsibility for our facebook site.
I also spent many years working with our Community Care for Elderly Programme. Liaising with all the necessary services to provide daily care and support where needed. My responsibilities incuded, administration, supervision and organisation.
Currently I am the Editor for our Club Magazine - produced quarterly.
My point is - I have considerable computer services to offer in aid of your Charity. I am unable to work now, so I would gladly give my time and effort to your cause.
Bernie
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BernieEllen
Thank you for your offer of assistance, it is reassuring to know that I can ask someone if I need help.
Where are you in your treatment? Do you go to St Vincent's? I listen to RTE and the stories I hear about what happens or rather doesn't happen to people with the medical card is frightening.
Michael0 -
Walked my three miles this morning - got my FIGHT LIKE A GIRL T-SHIRT on without prostethics . . . going to my first chemo today at 9:30 . . . . PEACE TO ALL YOU!!!!
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Hello Dulcie
I was so glad to hear from you. I was also glad to know that you have been to your radiation appointment and that your OH was with you. I feel that it is quite out of order to have had to wait three hours before you were seen and then not to have any explanation. I know that I would have had something to say about that. When I go to my appointments with my breast cancer consultant surgeon, which is always on a Friday, there is a noticeboard on the wall telling patients which of the consultants are running late and by how much. The receptionist tells you when you sign in whether there are delays and there are announcements explaining why everything has got behind!!!At least you got to see the top man himself. By this do you mean your oncologist instead of a registrar or do you mean someone completely different and in the department where you will have your radiotherapy? My oncologist arranged my oncology treatments and then I was in the hands of the people working the radiotherapy equipment.
It is interesting that the medics are taking notes on what people know and do not know about what is happening to them. Be proud that you are down in the little black book as being well read. That is where you want to be. Like that you are less likely to get the talking down treatment.
Am I to understand that you will be having five weeks of radiotherapy. I would have thought that before you start radiotherapy that you would have had an appointment in the radiology department to see a prototype of the actual radiotherapy equipment and to lie down on it to have the markings put in for where the radiotherapy treatment will be targeted. That is what happened with me. At that appointment I was given a special smock to take with me and put on each day before the radiotherapy. There were cubicles where you went when you were called in for your appointment. You had to take off your top clothes and put on the smock. You were then taken to the radiotherapy machine, very carefully positioned on it and made sure you were comfortable. The room was then darkened, the radiologist went out, and the machine was started. You have a mechanical arm-like structure working above you and coming quite low. It is not frightening and is all over very quickly. At the prototype appointment I was given a special cream to rub in after each treatment. I was also told not to use Dove soap because it had metal in it. I used Simple Soap. You should also be told not to use talcum powder before treatment. I found the most tiring aspect of radiotherapy was having to go every day, five days a week, for three weeks. I also had booster treatment with these treatments. I had no problems that I could see of feel.
Will you be going to the same hospital as you had for your surgery and the bit of chemotherapy?
I should try not to focus on any possible side effects. I remember being told about possible inflammation of the lungs and a cough. I did not have any. I think you have to focus on the positive side of the treatment, which is, trying to keep people alive. I am quite sure that I would not have survived without the treatment.
It sounds as though you had quite a day yesterday. I do hope the wound site will heal up soon and that you will not need any more draining.
Do you know when you will start the radiotherapy? I would have thought your breast wound would need to be completely healed before you start radiotherapy. I had my chemotherapy from beginning of November to the end of April. I then had surgery on May 17th and then I did not start radiotherapy until about the last week of June. I had check ups in between each treatment to make sure I was ready to proceed.
What is going to happen if the lung nodules are cancerous? Will they not then do the radiotherapy? Will they do chemotherapy?
I do hope that everything will go well for your OH when he sees the lung specialist. I suppose you can be a specialist in different parts of the body. My consultant breast surgeon is also an endocrinologist and her clinics are huge because she is seeing breast cancer patients and all those patients with thyroid, parathyroid, diabetes, and so on. I do hope your OH will find out exactly what is wrong with him and get any treatment that is necessary. He has had a lot of appointments and he needs to be told exactly what is wrong, where the problems are and how he can be treated. Too much time is ticking by.
You said the big day for you is Wednesday. Is that because you will have further news for yourself or have the final picture of what is wrong with your OH?
Do try to post all your problems on the thread if you can. In this way other people can see what you are going through and it can possible help them with their own problems and treatments. However, if you feel there are things you need to PM, then please do so.
We are all here for you and we have to get you through your treatment.
Take care.
Sylvia
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Hello Michael
You were asking about parathyroidism. The one that sam52 and I had was hyperparathyroidism, an over active parathyroid. A lot of people have never heard of this and they mix it up with the thyroid. The parathyroid glands are four small glands the size of a pea, that sit on the thyroid gland. Hyperparathyroidism is diagnosed by a blood test that shows elevated levels of the parathyroid hormone. There can also be elevated levels of calcium in the blood, but not necessarily. It is the parathyroid hormone that is the determining factor. The problem is, that when have routine blood tests, the parathyroid hormone is not tested. Because of this, you can be walking around not knowing you have a problem.I certainly did not know that I had a problem. When I was diagnosed with breast cancer, blood tests showed that my calcium level was slightly elevated. First of all my consultant and oncologist thought that my cancer had spread to the bones. A scan was done and my bones were clear. They then decided to test for elevated parathyroid hormone and discovered mine was very elevated and I was told that I had hyperparathyroidism. I was further told they would get me through my breast cancer treatment first and then deal with the hyperparathyroidism and that surgery would be needed. I was told not to take calcium because it would go into the bloodstream and cause serious problems. Apparently the over active parathyroid gland takes calcium out of the bones and puts it into the blood. I was told to monitor the situation through blood tests with my GP. As I went through my breast cancer treatment I more or less put it on hold. When I did go to my GP and asked for a parathyroid hormone test, and calcium, with a blood test, he looked blank. He told me they did not do parathyroid hormone blood tests and that in all his years of practice he had never had a patient with hyperparathyroidism! I told him I would get one done at the hospital, and then he changed his mind and said he could get it done. I had already started researching all of this, and eventually had the surgery, had a large non-malignant adenoma removed in 2009 and have been alright since. It was in 2009 that I discovered breastcancer.org, and somehow ended up meeting sam52 and corresponded with her. We went through hyperparathyroid surgery at roughly the same time.
I remember reading on the internet about a possible connection between hyperparathyroidism and breast cancer. It was a Swedish research paper. The researchers could not seem to make up their mind whether the hyperparathyroidism caused the breast cancer or the breast cancer caused the hyperparathyroidism, or whether there was something else causing both. They thought it might be exposure to x-rays in childhood. My consultant told me that she was in no doubt that the adenoma on my parathyroid preceded my breast cancer. She said that, by the size of the adenoma, she though I had had it for a long time. I do not quite remember how the two are connected, but think it was calcium that was the common factor. I sent copies of the research papers to my breast cancer consultant and to my oncologist and to another oncologist. They all appeared to be in the dark. Hyperparathyroidism and breast cancer does appear to pop up from time to time on this forum. There are postings on the forum Not Diagnosed with Recurrence or Mets but Concerned, and the thread is High Blood Calcium Levels. There is also a thread Hyperparathyroidism and Breast Cancer, but I am not sure where that is.
If I had not been diagnosed with breast cancer, I probably would still be walking around with hyperparathyroidism. There are symptoms apparently and my breast cancer consultant mentioned "bones and groans" and told me I would definitely feel better after surgery. Hyperparathyroidism causes osteoporosis, but I had no symptoms of this until I had the breast cancer treatment and was then diagnosed with osteoporosis.
There you are, Michael, that is a potted history of hyperparathyroidism.
I can understand that everything was such a blur when Janette's cancer returned and she was so ill. I am sure that you did your very best to cope. It sounds as though she did have positive receptors at that point. For pre-menopausal women they usually give a drug called Tamoxifen to deal with the oestrogen and for post-menopausal one of the drugs is Arimidex, an aromatase inhibitor. Sometimes I think they may start with the Tamoxifen and then switch to Arimidex. One of my neighbours has been doing this.
I was interested to know that Janette had been given capecitabine (Xeloda). This is a drug for metastatic breast cancer. I have read that it is given with docetaxel (Taxotere), but I know from your posts that Janette had already had that and had found it difficult. Apparently capecitabine converts to 5-fluorouracil in the tumour. This is a drug that is often used for primary breast cancer. Janette probably got infections because her immune system was very weak.
In a way these threads are also bereavement support groups, because, unfortunately, there are deaths. It is when this happens that we all feel very low and frightened. There have been some seriously ill women on here who have disappeared. You do not know what has happened to them. You do not know whether they have died or whether they have just got breast cancer fatigue and have decided to stay off of the threads. It is nice if a person lets us know they are taking a break and may just pop in from time to time. If they just stop posting you tend to think the worst.
Keep us posted about how you are getting on with your charity. I, for one, would definitely like to know how you set up one. It looks as though you have a helper in BernieEllen.
If you have time, you might like to have a look leisurely at this thread from the beginning. Take a few pages at a time. There is so much information on here and if you have any questions we can try to answer them.
Thinking of you.
Sylvia0 -
Hello FernMF and BernieEllen
I have not forgotten you. I need to take a break, but will be posting later.
Sylvia
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Hello BernieEllen
Thank you for the compliments about the shrubs.I must say that I am very impressed with everything that you are doing. I bet you do a good job as the administrator of your charity Motorcycle Run. I would love to know more about the Solace Centre in Waterford. How big is this centre and how much do you manage to raise in funds for it? What kind of things do you post on facebook? Do you know anyone else in your immediate surroundings that has TNBC?
What a worthwhile job you were doing with Community Care foe Elderly Programme. It is so important that elderly people get the care that they need. I truly believe that we should judge a society by the way it treats its elderly. I do not think England would get very high marks!
I am impressed that you are the editor of your club magazine. That must keep you very busy and I bet the magazine is very interesting.
It is very kind of you to offer help to Michael with his charity.
Remember to make time for yourself and to rest and relax. It is not that long since you finished your treatment and you must not overdo things. It seems ages ago to me that you, Maria_Malta, christina1961, bak94 and mccrimmon324 were all posting here as you went through your treatment. I felt so proud of you all as you touched that finishing line.
Wishing you all the very best.
Sylvia0 -
Hello FernMF
I hope that everything went well with you today for your first chemotherapy and that you are not feeling too under the weather. That combination of drugs, cyclophosphamide (Cytoxan) and docetaxel (Taxotere), must be a powerful combination. Are you having these two drugs for all the treatment or will you be having others?Make sure you drink plenty of water and get plenty of rest. Try to eat small, nutritious meals.
I do admire you for walking three miles before going for your chemotherapy. I hope you sleep well tonight.
Thinking of you.
Sylvia0 -
Hello everyone
I am posting the latest information from CANCERactive.A. Breast cancer, hot topics, cool thinking.
There is a list of information from 1 to 30. It starts with information about BRCA1, BRCA2 and PALB-2 mutations.
I must admit I had never heard of PALB-2.
I picked up on disturbing information that, whilst cancer in general, has predominately been an "old person's disease" with 80% of cases in the over 60 age group, the latest figures show that almost 40% of breast cancers are being diagnosed in younger women.
There is a lot of information about significant vitamin and mineral deficiencies in women who develop cancer. These deficiencies include selenium, zinc, vitamin C, vitamin B12 and vitamin E.
Women with the highest blood levels of omega 3 have the lowest levels of breast cancer.
Oily fish is rich in long chain omega 3.
Women with the lowest blood levels of vitamin D have more breast cancer and survive less.
Eating red meat is linked with a three-fold increase in risk of breast cancer, possible due to the hormones in the animals or pesticides from the fields in which it has grazed.
Cut out all dairy foods from your diet. There appears to be a direct correlation between eating dairy products and the development of breast cancer.
Cigarette smoking increases your risk of breast cancer. Secondary smoke is far worse for women than men, as genetic factors on the X chromosome are particularly affected. Women have two of these chromosomes, men only one.
Being overweight increases your risk of breast cancer.
Women who consume the highest levels of garlic have less breast cancer.
Cut all common glucose from your diet. Glucose is the favourite food of the cancer cell and there are several studies showing people with the highest levels of glucose have the shortest survival time.
Alcohol is a source of sugar. A woman's chances of breast cancer increase by 6% with every regular extra daily drink.
Go easy on salt. You need only one gram a day. Sodium poisons your cells.
Cut out bad oils. This means animal fats and other supposedly healthy oils. The worst fats are transfats. Originally they were thought to be inert, but they have now been linked to a higher risk of breast cancer and other cancers.
Oestrogen - the female sex hormone. It is made up of different compounds. Oestradiol is forty times more potent than oestrone.
Oestrogen fuels the fire of cancer. This has been known since the early 90s. Oestrogen drives about 70% of all breast cancers. It can cause genetic mutation.
Taking the contraceptive pill increases the risk of breast cancer by about 26%
IVF could be a cause of breast cancer, and the real nasty is HRT.
Another possible risk factor is the use of synthetic thyroxine.
Not getting enough sleep in a completely darkened room is now considered to be carcinogenic, especially for women. This puts night shift workers at risk of breast cancer. We need darkened rooms for the hormone melatonin to work. It is a powerful anti-oxidant and is also known to balance and reduce levels of oestrogen and insulin-like growth factor (IGF-1), both implicated in cancer development.
The World Health Organisation has now said that EMFs are possible carcinogens. They can act in the same way to lower blood melatonin levels. Research showed they even interfered with the performance of Tamoxifen.
Xenoestrogens are another concern. These are common chemical ingredients in everyday use that mimic the action of oestrogen once they are inside the bloodstream.
I have not completely finished this post, but I will try to do some more tomorrow and over the next few days. I strongly recommend that you read this information in more detail at the link above. Most of it we can something about to help ourselves.
In the meantime, goodnight and sweet dreams in a darkened room!
Sylvia.
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Thanks Sylvia, I enjoy the work that I do. The Solace Centre offers advice, support and counselling fo all cancer sufferers, family and friends. Other treatments include massage, reflexology and dietary advice.
Hello Michael. I live in Kilkenny, the nearest cancer centre is Ardkeen Hospital in Waterford.. My chemotherapy was carried out in a new unit at St Likes in Kilkenny and the radiotherapy was at The Whifield Institute in Waterford. Seems odd to have the treatment and care spread over the three but they are all state of the art facilities. I hold a medical card due to my Bipolar Disorder. The care and support I had and am continuing to receive is second to none.
As to knowing other irish TNBC women, I found Linali on this forum. I also have contact with ladies on two other forums.
Bernie
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Sylvia. Four rounds of taxotere and cytoxan. That's all. Things went well. I am symptomless so far. Bought a wig today. Get that white cell booster tomorrow. Thanks so much for following me. Thanks
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Hi FernMF
If that booster is neupogen it will be painful. My bones throbbed and ached. Make sure you have plenty of pain killers ready.
Michael
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Hello everyone
I am just going to finish the information I obtained yesterday from the first topic on my CANCERactive e-mail.Women with the highest level of plant oestrogens, known as phytoestrogens, in their bloodstream, have less breast cancer risk. Typically these women are in south east Asia, where a lot of fruit and vegetables are eaten.
Please read the rest of the details in this section.
We all probably know about indole 3 carbinol (I3C) and its benefits, especially for oestrogen driven cancers. We need to eat plenty of food from the cabbage family, especially broccoli, cabbage and greens, brussels sprouts and pak choi.
Foods in the carotenoid family are said to reduce the risk of developing breast cancer. Eat plenty of peppers, carrots, apricots etc.
The importance of beneficial bacteria and of having a healthy gut is mentioned. They are very important for your immune system.
Eat whole foods and a multi-strained pro-biotic daily.
Exercise is very important.
There is a warning about the risks of mammograms. The view in this article is that thermal imaging may be a better option.
The view is expressed, from studies at from Guys Hospital, that if you are going to have a breast cancer operation, and you are pre-menopausal, it is better to have your surgery in the second half of your monthly cycle. Apparently women who had their operations in the second half of their monthly cycle (when progesterone is the dominant hormone) had twice the long term survival rates of those women having their operation in the first two weeks of their cycle (when oestrogen dominates).
There is a school of thought that believes that natural (but not synthetic) progesterone is very protective.
The next bit of information is about stress and the development of cancer.
Please read this part carefully. I think that stress is a risk factor in the development of cancer and this appears to be the belief from CANCERactive.
On reading this part of the article, see if you think you fit the picture for someone likely to develop breast cancer.
Last but not least is the 2011 research from the Karolinska Institute which shows that women who have a local early stage tumour can clear the problem without having to go through surgery. This treatment is known as Ablatherm or Hyperthermia. Apparently it melts away the tumour in less than thirty minutes and avoids surgery and follow-up treatment.
There is growing evidence that surgery can spread breast cancers. Please see the CANCERactive website for more details.
I do hope you will find all this information helpful. Remember what we said long ago on this thread about knowledge being power.
Best wishes
Sylvia0 -
Hello FernMF
I was so glad to know that all went well at your first chemotherapy session. It looks as though, by combining Taxotere and Cytoxan, they are able in certain cases to cut down on the treatment. You are not having epirubicin or doxorubicin, which are called the red devil if I remember correctly. Taxotere is said to be very effective against TNBC and so it is probably good that you are getting it straight away.I was glad to know you have bought a wig. I think you will probably feel better with that to wear once you start losing your hair. I wore mine and felt good with it. My friends thought that I had not lost my hair until I told them otherwise!
I hope all goes well with the white cell booster today. That is something that was not offered here when I was diagnosed, or at least I was not offered it. I have heard a lot about it with people reacting differently to it. At least you should avoid neutropenia with this injection.
Let us know how you progress during the next few days. Are you having weekly chemotherapy or three-weekly? I had three-weekly.
Take care.
Sylvia0 -
Hello BernieEllen
Thank you for your information about the Solace Centre. Such centres are very important for cancer sufferers, friends and family. We have something similar in Exeter in the hospital grounds of the Royal Devon and Exeter Hospital where I go. It is known as FORCE cancer charity and is in a beautiful modern house which has nothing clinical about it.I was interested to know about other Irish TNBC women. I do not know anyone in Exmouth with TNBC, but there must be some. The other day I was reading through some of the threads and came across a post from an Irish lady. It was in the forum Chemotherapy before, during and after. I picked up on the name Caroline and wondered whether she was the same lady from Calling all TNS. She seemed to have a problem with swelling.
Wishing you all the best.
Sylvia0 -
Good afternoon Sylvia and all who post here...
I had my CT scan this morning..it seemed to be a lot quicker in the machine ..compared to my first one! But the first one was done in a 'general' hospital..this time the staff where very nice and polite and pleasant..and i was early..so went in straight away! I did not feel the dye pumping around this time ..maybe it was a slightly different type of scan? We had a problem with the veins again..but got there in the end! I now have to be patient and wait until..the 7th August for the result...
My other half was told yesterday that the nodules on his lungs ..are 'minute'..we actually saw them on the screen! Yet one of our doctors had rung him at home and told him there where 'numerous' nodules found in his lungs! (so nothing bad there)) So another worry gone....we are so pleased about that..but seeing a hematoligist might throw up something..that will be next week...
Tomorrow i will have a small cancer ..frozen..it is on my temple and i will go for a few visits until it has gone..another strange thing...i have had a 'family' cyst growing on my skull for years...all our family have them! But suddenly it has 'taken off' and is positively growing like mad...plus i have huge amounts of hair growing on my face....it almost seems like my hormones are highly active..especially with the tumour doubling in size within 3 weeks...it is of much concern to me! I mentioned it to the ONC...but she just grunts...in fact she grunts quite often! They really do hate to admit that they know nothing about Metaplastic breast cancer..at least my surgeon was a bit more honest !
Your flowers are so beautiful to look at..the colours are amazing! My pleasure outside my kitchen window..i have a bird table and a bird bath...i hide behind a large plant on the window sill..and it's so lovely to watch them squabble over their dinner..i have fed the babies from their early days and now they are almost adult...and watching them take a bath...is a delight! I only wish i had bought the bird bath years ago!
Take care and FernMF i wish you well on your chemo journey...you might feel better joining an August chemo group...i did..i was in with the March ladies..a wonderful group of support and i could not do with out them..in fact they are all meeting up in November and plan to have another one again! This was on anothe UK forum site...
FernMF do you know about the benifits of Mankuna honey to build your immune system up and ginger biscuits for sickness..and good old daily mouthwash..and they do an expensive but worth it..toothpaste to match..
Dulcie xxxx
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Hello Dulcie
I was glad to know you were happy with your CT scan and the behaviour of the staff. I hope that you get good results on August 7th.I hope all goes well tomorrow when you have a small cancer removed from your temple. I think it is getting quite common for people developing small skin cancers on their body, and, if they are what is known as basal cell carcinoma, I understand they are easily treatable. They usually occur where the skin has been exposed to the sun. A friend of ours has recently had quite a lot of them removed from his arms and face. The skin cancers about which to worry are melanomas.
As for the hair on your face, that is probably something to do with hormone imbalance. If I were you I would make an appointment to see the GP to discuss the problem. There can be many reasons for hormone imbalance. You should be able to get rid of the hair.
I would think that it is pretty difficult for oncologists to have detailed knowledge about the different rarer cancers. The rarer the cancer the less detailed knowledge there will be about it, unless you can find a specialist of metaplastic breast cancer. What is known apparently is that the cells in the breast do not look like normal breast cells but look like cells from other parts of the body. At least that is my understanding of it from what I have read, but the treatment seems to be the same, chemotherapy, surgery and radiotherapy.
It is good news that the nodules on the lungs of your OH are minute. The fact that they are minute does not mean that there are not many of them. If they are minute, it is still important to find out what they are and get them treated if necessary. However, it may be that the consultant has decided that they are so minute that they do not need treatment. This is something I would want to sort out. I hope you have good news from the haematologist.
I was interested to know about your bird table and bird bath. It is important to find pleasure in the simple things of everyday life. I know that there have been lots of animal lovers on the thread, especially dog and cat lovers. I love flowers, certain music and books. I also like helping people.
I can understand how you got support from a group of ladies going through chemotherapy at the same time, but you have to be careful not to assume that what happens to others on chemotherapy will necessarily happen to you. Psychologically, if one person says they have been sick to their stomach, you might think that it will automatically be the same for you, which is not at all true. Also, if you think something is going to happen, I think you can make it happen.
I think the anti-sickness anti-nausea benefits of ginger should be well known by now, especially to those on this thread. Ginger biscuits are good but you have to remember they do have sugar, although I understand it is low in sugar, and is one of the few biscuits diabetics are allowed. Fresh root ginger, grated up and made in a tea, would probably be better, or just simple ginger and lemon tea. Ginger capsules are certainly beneficial.
If you do have a sore mouth, then the Biotene toothpaste and mouthwash comes highly recommended. I do not know if it is available in the US.
As for the benefits of Manuka honey, it is supposed to do a lot of things for your health. I think, as breast cancer patients, it probably is prudent to be careful about it, especially during chemotherapy treatment, as it is sugar and we all know that cancer cells feed on sugar. All of these things need to be discussed with your oncologist and consultant.
I hope you are feeling more optimistic this week and that soon all the waiting will stop and any problems dealt with.
Thinking of you.
Sylvia0 -
Received my Neulasta injection today - I am a CHICKEN for shots, so after my fear-tears, it was over. I requested the shot to be warmed (they had already done that) . . I asked about getting it in my stomach as Sylvia suggested, the nurse said that they never administer in the stomach at this place. I haven't been there long enough to KNOW for sure, but feel confident they are competent and caring . . . so, in the back/fatty part of my upper arm. No problems. So far, no side effects. God is Good. Thanks for all the good news from you who are having anniversaries of note. This is WAY encouraging to me, a NEWBIE.
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Hello FernMF
I have just noticed your post and am glad to know that your injection is over. I think you must have mixed me up with someone else as it was not I who suggested that you asked about getting the injection in your stomach. With all these different threads it is easy to get posts mixed up. I know virtually nothing about Neulasta and the way it is administered. All I know is that it is apparently used with chemotherapy to prevent patients getting very low white blood cells. I was never offered this injection as I never had any problems with low white blood cell count. Anyway, I am glad that it is over for you and that it will stop any problems with white blood cell count. I am glad that so far you have no side effects.Keep looking forward. When is your next dose of chemotherapy?
Best wishes
Sylvia0 -
Hello again FernMF,
I have just discovered that it was Melrosemelrose who gave you that advice on another thread.
It looks as though different hospitals inject in different ways.
She gave good advice, especially about the importance of eating.
Thinking of you,
Sylvia.
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Sylvia - the Neulasta will be administered again, IF my white blood cell count plummets - this may be the only one I get. My next appt is just to see Oncologist - next week. Then, if all is right, then Round #2 will be 2 weeks after that (3 more treatments, 21 days apart). Hair to fall out 14-21 days - bought the wig (ordered it, the right color wasn't readily available) - getting my hair snipped short today - pre-emptive strike! Am canning beets and eating LOTS of vegetables harvested by my sweet husband from "HIS" garden . . . THANKS A BUNCH!
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Good morning everyone
I am sure you will have seen from the other threads that a young woman, blondelawyer, has died from TNBC. She was only 34 and had all her life in front of her. It has made me feel very sad and I feel more must be done about this breast cancer that is affecting such young women.
We have to focus on all those that are surviving and doing so for many years, otherwise we would all become despondent.
Thinking of you all.
Best wishes
Sylvia
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Hello everyone
The next part of the articles from my e-mail are as follows.
Breast cancer overview
Breast Cancer - causes and treatments
The link is:
http://www.canceractive.com/cancer-active-page-link.aspx?n=651&Title=Breast Cancer
Of particular interest to me were the parts on treatment - Tamoxifen, Herceptin, treatment for anaemia, treatment for fatigue.
Also of interest was The Way Forward - building your personal effective, integrative or holistic programme.
The next part was Eat Your Carotenoids.
The link is:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3237
There are some very interesting recipes here for those of you who like to cook.
What really caught my eye was the next bit entitled Mistletoe Increases Cancer Survival.
The link is:
This was of particular interest to me because, for those of you who have been reading the thread for some time, I took mistletoe extract, called Iscador, throughout my treatment. In fact, I started it before standard treatment, took it throughout my treatment and for a few years afterwards when I took a break as advised by my homoeopathic consultant. Last year I wanted to go back on it but the Primary Care Trust would not fund it.
Have a look at the pages on this. They write about injected Iscador, but I took oral Iscador on the advice of the medics carrying out my chemotherapy.
The rest of the articles is about Hyperthermia - the use of heat as a treatment for cancer.
The link is:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3078&Title=Hyperthermia
Finally, you can read about the benefits of red clover and Essiac tea.
The links are:
http://www.canceractive.com/cancer-active-page-link.aspx?n=2592
http://www.canceractive.com/cancer-active-page-link.aspx?n=528
Hoping you all have a nice day.
Sylvia0
