Calling all triple negative breast cancer patients in the UK
Comments
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Hello InspiredbyDolce (Debra),
Thank you for your post and it was nice to have you back on the thread. I did look at both links and did find them a bit confusing and quite difficult, but they were meant for doctors. I was surprised to read that it was information for doctors to prepare them for questions that it was though their patients might ask them following articles in the media. Do you know what these articles were about? I do remember headlines about a blood test to detect cancer, so I am wondering if this is what started it all. We are always getting sensational headlines about breast cancer and cancer in general, and all sorts of other diseases.
I do not know a lot about tumour markers, but since we are told we all have cancer cells in our body all the time, I would not have thought you could have the number 0. However, on the thread we are not doctors, so why not ask one of your medical team what this article is all about?
We have all these names being bandied about, tumour markers, tumour burden, circulating tumour cells, stem cells, and I am wondering what they all mean. I remember from a post long ago that someone said 38 was normal and now Peter has just said that 30 is the cut off point, but what does it all mean?
If anyone can enlighten us on all of this, would you please post to let us know? We need to know exactly what a tumour marker is and what circulating tumour cells are and we need to know what all these numbers mean.
If the moderators are looking on this thread, perhaps you would like to post here and clear up this matter and perhaps you would like to have a look at the two links InspiredbyDolce provided. Yhey are as follows.
http://www.investor.jnj.com/releasedetail.cfm?releaseid=754133
I have no idea how you can lower these numbers by yourself.
Best wishes.
Sylvia xxxx
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Hello again InspiredbyDolce (Debra)
It must have been in 2009 that I pushed to get my vitamin D tested. It is not easy to get it done here in the UK. I was taking about 800 IU at the time and they were just ordinary vitamin D3 tablets from Holland and Barrett here in the UK. I was eating my usual healthy diet. I was surprised to get a letter from my breast cancer consultant telling me that the level was 95 and she had been asked to congratulate me on that from the person carrying out the test. About a year ago I switched to Solgar soft gel vitamin D3 as I thought the soft oil ones were probably better. Because I am largely self treating my osteoporosis I am now taking about 1900 IU in addition to whatever I get from diet and sunshine. I think vitamin D3 is perhaps the most important supplement we need to take, especially in the UK where we have so little sunshine. I am hoping vitamin D3 will help to keep my osteoporosis from deteriorating and help keep breast cancer at bay. It is supposed to be one of the 'cure all' vitamins and not easy to get in your diet.
I hope this helps.
Best wishes.
Sylvia xxxx
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Hello FernMF,
Thank you for your post. I was interested in what you had to say about Facebook. I know lots of people are using this social networking site to keep in touch with family and I think it is a good idea, especially when families are far apart. It is true that everybody is very busy and too busy to connect with others. I do agree that it is a good way of staying in touch with your children and getting to see photographs. Family life has change so much to the way my husband and I were brought up. Families lived close together and we had aunts and uncles, grandparents and cousins all close by. In the modern world I can understand the role that Facebook has and it is definitely a way of life for younger people.
Like you, I have concern about everything we write over the internet. All this week we have had revelations about PRISM, a way in which everything we say or do on the internet or phones is being spied on. The powers that be say it is to protect us and that if we have nothing to hide we have nothing to fear, but there is general concern that all this is an invasion of our privacy and against our democracy.
I was interested to know how you went about finding some natural anti-depressants. It will be interesting to see how your medical teams react to what you are taking and their comments. I also tend to do what I feel is right for me and at the moment I am trying to take care of the osteoporosis caused by cancer treatment and a now cured over active parathyroid gland. I will not take bisphosphonates so my GP wrote down strontium and said I might like to research that. I did this, discovered she was talking about a patented drug called strontium ranelate. I decided that was just as harmful as the bisphosphonates, but then I started researching and reading about strontium citrate which is a natural mineral with which the body can deal. I then bought some online and have nearly finished the first lot. I am not aware of any side effects but have no way of telling whether it has improved my bones. I am about to write a letter to my GP to tell her what I am doing. Whatever she says, I shall probably continue to take them along with some calcium citrate, magnesium citrate, vitamin D3, vitamin K and some trace minerals. This is supposed to be the proper combination for treating osteoporosis. I take the strontium early in the morning, and the rest of the supplements later in the day.
Thank you for your kind words about the thread. I am sincerely dedicated to trying to support and help people on their breast cancer journey and I was glad the thread has been of help to you. Keep with us when you can and keep us informed of any information you have that might be of help to us. Enjoy happy days on Facebook!
Fond thoughts.
Sylvia xxxx
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Reading the post by inspired by Dolce, I am again befuddled about what both myBS and MO said about monitoring my status now that iam through with active treatment.
Both concurred that there would be no scans or blood tumor marker tests in my case. They both said that by the time a scan or marker would show a significant result, I would be having symptoms. They said the scans and marker trsts just make peopleanxious without giving usable i formation. Many of the esteemed oncologists in the Washington DC area feel the same, although that view,ought be modified after a recurrence or metastisis.
Several women on another board without recurrence, etc. are in search of doctors who are willing to do such tests. I am one of them. What specific tumor markers do people here get tested for. If I knew the name of these tests I might be able to convince my MO that I need them and they appear to be standard practice in the UK. I would rather be anxious about results rather than taken by surprise if am not NED.
Any answers or feedback would be appreciated.
Peggy0 -
Hi Sylvia,
The test is called CA125. I think the number refers to cancer cells in the blood or something similar. I understand that everyone has some but only a very few, hence under 30 being ok. Liz's friend never asks many questions so Liz has to work out from snippets of information she gets from her. I presume its not the number itself thats important but any increase in that number over a period of time.
If you were tested every year and the result was always in the 20's then thats not a problem but if your results have been around 10 then it goes up to 25 thats a sign something is wrong creating more cancer cells.
I know when Liz mentioned it to her surgeon he said her count was low as they expected. I think I am correct in saying if breast cancer has not spread then no cancer cells from the tumor will be found in the blood. It is only if cancer has spread.
Liz's friend has made an appointment at the hospital for 24th June I think with her oncologist.
Our other friend with brain cancer has been having treatment. He worked until last year for the NHS not sure what as though but he did have a very well paid job. They have a villa out in Spain next to ours and they had planned to retire there when they both left work but this is not going to happen now and they were last there in February. They have been in England for the past few months as he is having treatment.
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Hello Sylvia
Just a very quick post;you asked me in a recent post why I was seeing a rheumatologist - the reason for this is that I was diagnosed with fibromyalgia after treatment (so I am blaming chemo and endocrine therapy.)
He was curious about my vitamin D levels recently and I asked if I could have my PTH levels checked at the same time, and also for a DEXA scan to be arranged.
He is a strange doctor - he never spends more than a couple of minutes with each patient, but is usually willing to arrange any tests or scans you ask him for.I am glad I have this link,since I have been discharged from both oncology and endocrinology.
I am not going to see my father this weekend as I will be very busy writing reports....
With love,
Sam x0 -
Some Oncs do not believe in Tumor Markers, because for some individuals, they had normal markers, but had bc, and others with high markers didn't have bc. They are typically best used to monitor stabiliy or progression or response to treatment.
Regarding the article, since it was in reference to a very specific test that has not been approved yet, I am inclined to think it is a very specific circulating cell test, which should be different than a tumor marker (burden) test.
I do see my Onc next month and if I get to ask him, I will be sure to post any information I receive here!
Here in the US there are 2 breast cancer tumor marker tests: CA15-3 and CA27-29. Some Oncs use both, some use one or the other, and some use none.
As PeterandLiz mentioned, they look for patterns, and changes in behavior to those patterns.
I hope everyone is having a great Friday!
Debra
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Hello peterandliz,
Thank you for your post and for posting the number of that test. I think it must have been mentioned before on the forum because it seems familiar. I think Liz's friend is probably wrong not to be asking questions because after all it is her body that is going through all this. However, there seem to be many who cannot deal with any information. It is probably due to fear and not being able perhaps to face up to the reality of their situation. I was speaking to someone yesterday who does not know about my breast cancer, and they were telling me they suffered from Parkinson's disease and said they were glad they had that rather than cancer! As for the CA125, as you say, it is probably a monitoring test, a bit like the PSA test for prostate cancer and which is said to be unreliable. With the CA125 it is obviously not used as much as the PSA test. I once asked my oncologist about routine blood tests and she said they were only good for the day. I was not quite sure how to take that.
I hope your friend's treatment for his brain cancer helps.
Have a good holiday in Butlins.
Best wishes.
Sylvia
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Hello sam52,
Thank you for your post. You know I am always pleased to hear from you.
Thank you for explaining why you are seeing a rheumatologist. I did not know that you had been diagnosed with fibromyalgia after treatment and that you think it was due to chemotherapy and endocrine therapy. I think chemotherapy has all kinds of long term side effects because it really poisons the body and I am sure it affects the bones, in fact I have read that it does. I have written to my oncologist this past week to ask her what I should be doing about mammograms, as it was my breast cancer consultant surgeon who had been arranging them and I am now discharged from her, both as my breast cancer consultant and endocrinologist. I have asked the oncologist whether I should be seeing a rheumatologist for the osteoporosis, since last time I saw her she asked me what the rheumatologist thought about my osteoporosis. It all gets a bit confusing. Basically I think we are on our own!
I hope you found the numbers that I gave you about my vitamin D and PTH levels were useful. Of course, they are not recent.
I was interested to know about your doctor but not impressed that he does not spend much time with patients. I suppose it is much easier just to order tests or scans.
I suppose we have to put the hyperparathyroidism behind us and be happy that we are 'cured', but I think I shall always have it in the back of my mind that another parathyroid gland could malfunction and that I shall not be aware of this because of the lack of routine PTH testing in routine blood tests.
As for the breast cancer, I suppose we shall have to live with the knowledge that we have been in the clear for quite some time, but that we can never take anything for granted.
As for the osteoporosis, I feel that I am in limbo and on my own. The last time I saw the GP, as you know she was trying to push bisphosphonates but I shall never take them. As you know she then wrote down strontium but failed to put the added ranelate and said I might like to research that. You know that I did and concluded it was just as bad as the bisphosphonates. I then researched strontium citrate, a natural form of strontium, ordered some online and am still taking it. I take 680 mg (two capsules) every morning. I am getting to the end of my first bottle. It is Doctor's Best Strontium Bone Maker and I have to decide whether to order another bottle. I do not appear to have any side effects but have no way of knowing whether it is improving my bone density. What do you think? I am going to be writing to my GP to tell her what I am doing!!!
I saw an article in one of the papers last week about how therapeutic gardening is for cancer patients. At least we are doing that right.
I hope you will be able to have some quality time for yourself when you have finished doing your reports.
Are you still managing to do some reading? I have just started reading the paperback edition of Sweet Tooth by Ian McEwan but have not got very far.
Is your father still in hospital?
Keep in touch and take care of yourself.
Love.
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
Thank you for your post. I agree with what you said about tumour markers.
I did realise that the article was in reference to a very specific test that has not yet been approved. We shall have to wait and see what happens.
It will be very useful if you manage to get any information from your oncologist and then let us know. This is the only way to keep up to date and hopefully make progress.
Thank you for posting the marker tests. It looks as though different countries are using different numbers and letters for the tests. This is what goes on for measuring certain tests as well, for example I do not know if vitamin D is measured in the same way in the US as in the UK. I do know that cholesterol is measured differently in the US to the way it is measured here. The units are different. It would be useful if everything was measured in the same way, especially with all the communication we have world wide over the internet.
I hope you have a nice relaxing weekend.
Here in Exmouth it looks as though we are in for rain. On Sunday it is Father's day so I suppose the restaurants will be busy.
Best wishes.
Sylvia xxxx
To everyone posting and viewing on this thread, thank you for your contribution. Have a good weekend.
Sylvia.
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Good evening everyone
I wanted to let everyone know that I published a link of the Janette Collins Foundation web site concerning research showing that the addition of carboplatin seems to show a more than 20% improvement in pCR for TNBC.
Winter has returned to Ireland and I have had a bad two days suffering the side effects of Neupogen. It is, by far, the nasiest drug I have ever had to take, so far.
Best wishes
Michael
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Hello Michael,
I am just posting to say thank you for your post and that I was sorry to hear that you have had a bad two days suffering from the side effects of Neupogen. Reading through various posts over time it seems that like everything else this drug affects people in different ways. Some seem fine and others have problems. I cannot speak from personal experience because it was not offered to me in 2005/6 and I seem to be among the minority of those who did not suffer much through chemotherapy. I do hope you will be feeling better soon. I am sure I speak for everyone on the thread.
Thank you for the information about the link. I shall look at it later today. I understand that pCR stands for polymerase chain reaction but am not sure what that means. I am sure the link will tell me.
I sympathise with your bad weather and it is the same in Exmouth. Last week it was a heat wave and the seafront was absolutely full of people. Today the weather is miserable, cool and damp.
Thinking of you.
Sylvia.
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Hello Michael,
I have just had a quick look at your thread and discovered that pCR in this case has nothing to do with polymerase chain reaction, but much more simply pathological complete response. There must be lots of us that have had a pCR on neoadjuvant chemotherapy before carboplatin was added to the treatment. I think, especially in the UK, the addition of the platins for primary cancer is relatively recent. During my own neoadjuvant chemotherapy in 2005/6, even though I had a large tumour, these were never mentioned. I am not sure what goes on now, but in the UK we are always behind. I just had cyclophosphomide, epirubicin and docetaxel. I know my tumour shrank, but it did not disappear, but after my mastectomy I was told that my pathology report was excellent and there was no visible evidence of disease. Somebody I know on the same treatment but with a smaller tumour, did have the tumour completely disappear. If carboplatin helps to improve these statistics that can be only for the good but what are the side effects of this drug? I read the forum regularly and the same drugs seem to be in use, on the whole, for primary breast cancer, with the variation of doxorubicin and paclitaxel.
I shall write more later.
Best wishes.
Sylvia.
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Hello Michael,
I have just managed to sit down and read the article on the Janette Collins foundation about some latest research with carboplatin added or not added to patients with TNBC and those with Her2 +.
Obviously, as in all of these drug combinations, there were quite a lot of patients suffering nasty side effects. Only time will tell where this research goes.
I still think that the answer to this cancer disease does not lie with all these lethal drugs. There has to be something in the way we are living that has seriously jeopardised the functioning of our bodies and we need to find a way of putting them on the right path again and preventing this awful disease, the statistics for which seem to be getting worse and worse.
I do hope you are feeling better. Are you taking any interest in the G8 summit in Northern Ireland?
Best wishes.
Sylvia.
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Hello everyone,
I found a snippet of information in the Daily Express yesterday that immediately caught my eye. It was entitled Brittle Bone Drug Can Fight Off Breast Cancer by Will Grant. It is about medication used to treat osteoporosis could help tackle drug resistant breast cancers. The drug in question is called bazedoxifene and it works by stopping cancer cells from responding to oestrogen, a hormone that causes some breast cancers to grow. This drug is approved in the EU as a treatment for osteoporosis and it is hoped it could soon become available as a cancer drug. We are, of course, talking about another drug for hormone positive breast cancer, but we have to remember this affects the majority of women. I am posting it here as it is new information, not only as a SERM medication for breast cancer, but, because it is already used in the treatment of osteoporosis in Europe. There are a lot of us that develop osteoporosis after cancer treatment and as a result of taking such medication as aromatase inhibitors such as Arimidex.
I would be interested to know if anyone reading the thread is taking this for osteoporosis as I had never heard of the drug until I read the article yesterday.
This morning I went straight to Google and found this drug is very much in the news. If you put in the name of the drug you will find a whole lot of information and it is all as recent as June 2013.
I have got to read all this information in much more detail to find out how this kind of drug can help osteoporosis and very importantly what the side effects are. It would also be interesting to find out if it is being prescribed in the UK for osteoporosis, since it says in the article it is used in the EU and we are part of the EU (albeit perhaps reluctantly and for the moment until some politician actually delivers on the promise of an in/out referendum).
I should mention that it is said in the article that it was discovered that this drug actually gets rid of the oestrogen receptor. You might want to look up Dr Donald McDonnell, a lead researcher at Duke University in the US.
The article also mentions that there are about 55,000 people diagnosed with breast cancer each year in the UK and 12,000 die from it.
These findings were presented at an Endocrine Society conference in San Francisco. Also, at the same time, a separate study calls for earlier screening of breast cancer, apparently research has found that women between 35 and 39 who had mammograms saw cancer detected at an earlier stage.
If you want more details about this have a look at the article online, and, as said, Google the drug.
To everyone, I hope the week has started well for you and I do hope that all of you will think of Carolben and Michael who are still going through treatment.
It looks as though we no longer have a group of women going through treatment on the thread and posting their experiences and offering mutual support. It is in some ways a pity because those groups made us strong and interactive. For some reason it is not happening now.
That is all for today.
Best wishes.
Sylvia
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Hello again everyone,
I just wanted to post the following link which I found has a good and simple explanation of this drug. The link is:
I have just noticed on Breaking News on the breastcancer.org site that there is a notice about the problem of anxiety following breast cancer and having to live long term with the after effects etc. of treatment and the mental strain of it becoming a part of your life. Have a look at it.
The link about this drug for treatment of osteoporosis is the following:
I must admit I do not like the sound of it for osteoporosis and I shall certainly not be taking it. Anything that flags up possible clots and strokes sends alarm bells ringing for me. I would assume you would have the same side effects from this drug when used for breast cancer.
Best wishes.
Sylvia
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Hello Sylvia
I was just about to post the same information about bazedoxifene - I read a reference to it yesterday and wondered if this might be an answer to our prayers (for osteoporosis).But judging by the side-effects,it is definitely not something either of us would contemplate.
Have you heard about the amazing research into neuro-endocrine tumours at the University of Uppsala in Sweden? They have found/cultured a virus which actually kills the cancer cells.....and of course, cannot get funding. So it is being funded by donations world-wide, and a very generous contribution from a NET sufferer in the USA.It seems like exciting new avenues for research.
With love,
Sam x
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Hello sam52,
Thank you for your post. I definitely do not think that the two of us would go anywhere near such drugs. It looks as though this will not be a welcome treatment for osteoporosis. I am more or less convinced we have to do all we can to treat it through our diet and by remaining active. I have written to my oncologist and my GP asking advice about how to keep my osteoporosis stable or even improve it, but I am not confident of a reply that fits in with what I think.
If you can, try to read the book I mentioned, Your Bones, as it mentions some tests that can be done to ascertain what is happening to your bones and does not require a DEXA scan. To cut a long story short, I have told her that I have been taking strontium citrate for a couple of months and would like to find out if it is having any effect on my bones. I have told her that the book indicates that the most reliable test is a bone breakdown test known as CTX, which is done through a serum blood test and that improvements may be seen after two or three months. I shall let you know if and when I receive a reply.
I had not heard about the research into neuroendocrine tumours, but I do have confidence in Swedish researchers. It all sounds very interesting. I do not know much about these tumours except that they are rare and can be malignant or benign. It is awful that they cannot get funding. Please keep us posted.
Thinking of you.
Love.
Sylvia.
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Hello everyone,
I have this evening gone back to page 1 of this thread and have been looking through a lot of the posts from page 1 to page 20. This is about the first year of the thread. There is so much information on the pages that I think it would be highly beneficial to new people to start from the beginning and work their way up.
One weakness on the way the thread works is that I discovered that when I had read pages 1 to 7 and then took a break I had to start back at page 1. If you are reading so many pages a day it is a weakness if you have to keep going back to page 1. Does anyone know a way round this?
Going through those pages I have to say how much I admired the core posters at that time as they went through treatment. There was a strong group of Karen3, TEK2009, Josephine, all three from the UK, christina1961, bak94, and mccrimmon from the US, Maria_Malta from the island of Malta and BernieEllen from Ireland. What a contribution you have made to this thread. I also need to mention gillyone, sam52 and dear suze35 who unfortunately died.
You might be interested to read some information on page 6 about a book Vital Signs for Cancer by Xandria Williams. I remember reading it with great enthusiasm.
On July 12th 2011 there is interesting information about all the possible side effects of chemotherapy drugs. It is on page 11.
I have decided to post the information here as I posted it then.
Hello Everyone
Since we have been discussing chemotherapy treatment, with the emphasis on the different drugs, I thought I would post a list of general side effects for quick reference. They are as follows. Just remember this is a general list and that the drugs can affect us all differently.
Bone marrow suppression.
Most chemotherapy drugs reduce the production of blood cells in the bone marrow. If these blood cells are reduced you will have a lowered resistance to infection (white blood cells), anaemia (deficiency of red blood cells), bruising/bleeding (sign of a low platelet count) including nosebleeds and unexplained bleeding.
Nausea and vomiting
There is anti-nausea medication for this.
Sore mouth and mouth ulcers
Take great care with oral hygiene. Use Biotene toothpaste and Biotene mouthwash for a dry mouth. These things are common after anthracyclines (epirubicin and doxorubicin).
Hair loss
This happens with the anthracyclines and taxanes (paclitaxel and docetaxel). You can ask about a cold cap to prevent hair loss. Hair loss usually starts two to three weeks after the first chemotherapy.
Eyebrows and eyelashes and body hair can also disappear.
Premature menopause
Fatigue
All chemotherapy causes women to be tired and fatigued. You have to take it easy.
Diarrhoea
This can be controlled by medication.
Thrombosis and pulmonary embolus
Women on chemotherapy are at a slightly increased risk of complications. Any leg swelling or breathlessness should be reported to your doctor.
Problems with veins
Injecting chemotherapy into a vein damages it. The vein may become sore and hardened and the blood stops flowing in the vein. This usually settles down after a few weeks.
Cystitis
Drink plenty of fluids.
Damage to nerves
The taxanes can cause damage to nerves of the hands and feet and this can cause pain, tingling or numbness. Let your doctor know if you experience these symptoms.
Redness of the hands and feet
5-fluorouracil given through IV or oral capecitabine (Xelda) can cause the palms of the hands and the soles of the feet to become red and sore.
I experienced redness of the hands and feet on docetaxel and facial blushing on cyclophosphamide and epirubicin.
Skin and nail changes
You may get dry skin on feet and hands. You may get discoloured nails and sometimes the nails may fall off.
Dizziness/hot flush
This can happen with cyclophosphamide.
Temporary taste changes
This can happen throughout treatment. You can also lose your sense of taste.
Red urine
Epirubicin is red and your urine may be red for a day after chemotherapy.
Damage to your heart
Epirubicin and more so doxorubicin can cause heart damage. Doses are carefully calculated and there is close monitoring, so this is unlikely.
I had ECGs before and after chemotherapy.
This is just a basic outline of possible side effects. Please post if you can add information about any of these or if you want to discuss any of the side effects mentioned in more detail.
This is my post from page 6.
I thought I would start posting some bits of information that I have picked up from my reading of the Xandria Williams's books. This is about early warning signs, the predisposing factors that could be leading you in the direction of degenerative diseases in general and of cancer in particular. She divides her books into preventing cancer and preventing recurrence or spread if you have already had cancer. She believes in getting a test done called the CA profile. She then recommends the following steps.
1. Improve your diet.
2. Correct any nutrient deficiencies.
3. Improve your digestion.
4. Support your liver.
5. Get rid of toxins.
6. Correct your energy production and your sugar metabolism.
7. Balance your neurotransmitters. Reduce your stress levels and give your adrenal glands a chance.
8. Correct any other predisposing factors.
9. Reduce your risk factors.
These are just the basic steps and she goes on to expand them in the various chapters of her first book, Vital Signs for Cancer.
What I have picked up from the above steps is that stress appears to be a big factor in the development of cancer. It is stated that it is generally recognised that cancer becomes apparent two to three years after periods of extreme stress. It is important to learn to relax, to laugh and have fun, and try not to worry. I know this is difficult with a diagnosis of BC, but we somehow have to learn to do it or deal with stress that is unavoidable as best we can. It also states that exhausted adrenal glands are a prime cause of several problems that generate triggers which convert healthy cells into cancer cells.
I got the message loud and clear from my reading that in dealing with cancer, whatever stage you are at, you should eliminate all sugars from your diet. It appears that sugar feeds cancer cells.
Among predisposing factors are stated an under-active thyroid gland, an under-functioning immune system and faulty oestrogen metabolism.
I must point out that I am just giving a basic idea about some of the things that I have been reading. They are there for you to read and to form your own opinions. We can discuss anything you like about this information. This thread is all about exchanging ideas, experiences and supporting one another.
This should all give you food for thought.
Best wishes.
Sylvia
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and here I am, limping back - got a flu bug which developed into a low grade bronchitis and I've been sick as a dog and was in bed for about 10 days. My blood counts had been dropping and my immune system was shot, so I was a sitting duck, I guess. It was seriously not nice, on top of the existing fatigue and chemo. At one stage I thought I'd never get better, but I am. Each day is better - haven't had chemo now for 3 weeks and I have another week off still. I did go through to see my onc yesterday and that was good. Once again, I'm not sick from the cancer but as a result of the treatment - it's insane really!
Gosh, I can't wait to finish this chemo, cos I know how the body recovers and starts feeling better once it's not being done in with chemo! I swear I'll never take feeling healthy for granted again!!
Your English cricket team have just decimated us in the ICC, I'm beside myself!!
As usual you have given us lots to read, Sylvia, thank you - I'm going to try find the article on anxiety. Of 3 of us here in my little town, we all experienced a period of stress or anxiety about a year or so before the bc diagnosis. I broke my shoulder exactly 1 year before I found the lump and started experiencing anxiety attacks, which I'd never had before that. You can just imagine my anxiety once I got the dx!! I now take anti anxiety meds, which have helped hugely.
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Hello Carolben,
I was so pleased to hear from you, but sorry to hear that you are feeling so unwell.I do hope things will get better soon. I do keep reading that the treatment is worse than the disease, but what other option do we all have. These drugs are lethal. Focus on pleasant thoughts and tell yourself this will soon be behind you.
I shall write more tomorrow when I have more time. Tomorrow will mark eight years since I was diagnosed.
You can get through this. Thinking of you.
Sylvia.
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Hello Sylvia
Since I will be at work tomorrow,and not able to get to the computer.....I would like to be the first to congratulate you on your eight years!
I have read that, for triple negatives, after eight years you can consider yourself cured....
With love,
Sam xx
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Hi Sylvia,
Just popping in to say congrats on 8 yrs and how you have used your time to support and inform us all. x
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Hello sam52,
Thank you for your post and for your kind words. As you know, you are very special to me as we met on this site and you were the first person with whom I had contact and I think we have got to know a lot about each other.
It is hard to believe that eight years have gone by since that day on June 20th 2005 that I went to my local surgery to see the woman GP there and she pronounced the words saying she was pretty sure I had breast cancer. That day is still so clear in my mind and it really changed my world for ever.
I have also read information about triple negative and how after so many years you can be considered 'cured'. On this forum you read posts from women who have had TNBC coming back after much longer than eight years, so I just cannot take anything for granted. The fact that my oncologist said she wants to keep me with her for another two years makes me feel that it could still come back!!!
How do you feel about recurrence, metastases or a new primary after diagnosis in 2001? I know that yours was not TNBC but I just wondered how you felt about things.
I was looking at the photograph of your cat and I was trying to remember whether you still have him/her. I remember your cat was pretty unwell but I cannot remember what happened.
I do hope that everything with your father's situation is progressing and that all is well with your son.
Thinking of you.
Love.
Sylvia xxxx
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Hello linali (Lindsay),
Thank you so much for your kind words.
I hope all is well with you and your family. How are things going at the centre and are you still finding it useful. Are you still experiencing pain and if so what is being done about it? I hope all is well with your son and that you are getting a lot of enjoyment out of little Oskar.
Keep well and keep in touch.
Do you ever hear from Mumtobe (Carol) and BernieEllen?
Fond thoughts.
Sylvia. xxxx
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Hello Carolben,
At long last I have found some time to sit down at the computer. I was so sorry to know that you caught a flu bug which developed into bronchitis and that you have been in bed unwell for about ten days. I remember being told that you have to be very very careful when you are on chemotherapy to avoid catching anything and I was advised to steer clear of crowds, especially supermarkets and public transport. I did not go to the local surgery during chemotherapy, but had the district nurse come to my home to take the blood necessary before each session. She usually came the day before. I also stayed away from anyone who had the sniffles or coughs.
I do hope you will manage to keep your blood counts up.
The good news for all of us is that you are getting better. I hope you will be well enough to have your next chemotherapy session in a weeks time. I do know that when I was having chemotherapy I felt normal pretty quickly after the first few days, but I have to remember that you are going through all this for the second time, so I can understand how much more difficult it is for you. It is terrible that these drugs are so toxic and take such a heavy toll on the body.
I was glad to know that you find the information that I post helpful. I was amazed really when I started re-reading the thread at just how much information there is. I certainly think there is a connection between stress and anxiety and the development of breast cancer. It makes so much sense to me. When we are stressed we produce the hormone cortisol and apparently that has a negative effect on the body and probably leads to a state of inflammation in the body that is said to be connected to cancer and other degenerative diseases. My own consultant told me at my first appointment that I should not have had cancer and that stress probably played a part.
It is strange that you mentioned you broke your shoulder a year before you found a lump. I discovered my lump after straining my right arm trying to cut some hard branches on a shrub with a pair of secateurs when I was helping my brother in his garden. A large lump seemed to come from nowhere and I delayed a long time before going to the doctors. I have read many stories of women developing breast cancer after such injuries or falls. I also have bouts of anxiety now and tend to worry about things, even if I tell myself to stop worrying. Of course, once you get the diagnosis you are in a state of anxiety all through treatment. Let us face it, for most of us, life is a gruelling experience.
What are you taking for your anxiety and are you aware what the cause of your anxiety is? I find funny programmes that make me laugh are good for me, not to mentions a bar of 90% dark chocolate! In Exeter there is a shop called Hotel Chocolat which sells 100% dark chocolate but the price is exorbitant.
Are you managing to read any good books while you are going through chemotherapy? Do you listen to any music? I love Mahler's 4th symphony and I find it transports me to another world, but I do not get enough time to listen to it.
I am thinking of you and wishing you well.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
I sincerely hope that you have felt better as the week has gone on.
We are having strange weather in Exmouth. Yesterday was so hot and humid and the temperature in our apartment was 24C. Today we have had fine rain but not the monsoon we were told to expect, and that we need for the garden. There has been a very cold breeze and the temperature in our apartment was 17C. Outside it was 15C.
Thinking of you.
Sylvia.
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As you know I am re-reading the whole of this thread and posting relevant information, as I think people new to the thread for the most part start at the most recent pages.
I have been reading through some of the threads, books etc. and wondering whether some women, especially newly diagnosed ones, are finding all the different drugs mentioned a bit overwhelming and confusing. I thought it would be useful if we could get them sorted out on this thread to help patients.
With TNBC, when you are newly diagnosed, you will be told of the three basic tools for treatment. They are a combination of surgery, chemo and radiotherapy. It is with the chemo treatment that the list of drugs start to grow. Unless there have been big changes since my own diagnosis, I think, especially in the UK, that the treatment remains much the same. The drugs are as follows. Others are now being added to this.
Chemical name Brand name
doxorubicin Adriamicin
epirubicin Ellence
cyclophosphomide Cytoxan
docetaxel (Taxanes) Taxotere
paclitaxel (Taxanes) Taxol
cisplatin Platinol
carboplatin Paraplatin
There are other names of drugs that keep appearing, but I am not sure when they are used for TNBC or indeed for other breast cancers.
We all know that the real challenge in the treatment of breast cancer is often not with primary cancers, which often respond well to chemotherapy treatment, but with metastases (spread to other organs), or recurrence.
These are names of some of the drugs that keep appearing.
capecitabine Xeloda
This is an anti-metabolite drug. It stops cells making and repairing DNA, which stops cancer cells reproducing. Xeloda changes capecitabine to fluorouracil in the body, if I have understood correctly.
zolendronic acid Zometa
This is a bone targetted therapy for patients with bone metastases.
It is being used for breast, lung, renal and prostate cancer.
It belongs to the group of drugs known as bisphosphonates.
bevacizumab Avastin
This is a drug that is used for various cancers, including breast cancers. It is a drug that is used to stop angiogenesis, that is the formation of new blood vessels, that cancer cells need to reproduce themselves. I think it is used for lung metastases.
ixabepilone Ixempra
This drug is used for advanced breast cancer. It acts in a similar way to the taxanes, but is said to be more effective and to have fewer side effects.
I hope this list will be of some help.
Two drugs often mentioned to deal with the side effects of chemotherapy are Neulasta and Neupogena. These are used to fight infection and build up white blood cells.
If you are wondering, from one of the postings, what a muga scan is, it is used to monitor heart problems.
EPO is a blood boosting drug. EPO = erythropoietien = a hormone that boosts red blood cell production.
If there are other drug names or terms that you do not understand, please ask as we can all sort them out together.
We all know that we have to be vigilant when looking things up on the internet. Apparently, the best sources seem to be breastcancer.org or cancer.org. There are good research papers on the internet, if we have the patience to look for them.
That is about all for now. We are all thinking of those going through all the various stages of treatment, dealing with recurrence and metastases, or living healthily, but with the ever present thought of something happening to change the clear pathway.
This is some information that I posted on page 6 back in June 2011. I think most of it is still relevant. I hope this will be useful, especially to the newly diagnosed.
Best wishes.
Sylvia.
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Hello Sylvia and all. I'm so sorry I have been absent from the boards. Have been busy. Started back at work and Emma is almost 8 months now, keeping us on our toes! Today marks a year to the day since my diagnosis. I am on hholidays in France at the moment. Eating loads of chocolate, drinking wine and coffee, eating white bread, all the things I never do at home but I will get back to being good when I return. I hope you are all well xxx
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Hi Sylvia,
We have been busy at the centre with a pamper day, launch of our partnership with the HSE and today a conference in Galway followed by the choir.
I am hopeless on the computer but will try to post the link.
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