Calling all triple negative breast cancer patients in the UK
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Hi Mary,
First and foremost, have a very happy Thanksgiving celebration with your family. Absolutely agree, give Black Friday a miss. Greed and money are wrecking Christmas and Thanksgiving which ought to be peaceful, happy times when children build positive memories for their future. How many possessions do people need for Heaven's sake?
You're right, my FEC treatment is just flying by, even on difficult days. I've decided to try icing my hands and feet during T. No-one else on the chemotherapy unit does, and as I will be taking the bags of frozen peas approach, it'll probably raise a few smiles. There's some evidence that icing helps to prevent peripheral neuropathy, we shall see.
I'll need to go to hospital to have my PICC line flushed, it's a quick 11 miles, so not too much. I just wish that our community nurses were trained to do this, especially as the Government has placed so much emphasis on moving more healthcare into the community to free up hospitals. You must have become quite an expert on flushing whilst your husband was undergoing treatment. Quite a responsibility all the same.
Hope you find out what's going on with your brother very soon.
Enjoy Thanksgiving.
Love,
Gill X
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Hello Sylvia,
I agree with you, why does the UK adopt events like Black Friday and ignore something as positive as Thanksgiving? Why does everything have to be about money these days? It's all so negative and impacts on our health, particularly mental health.
From your various comments about Canada you appear to miss it. All the reports back from people who've spent time there do seem to point to a happier more relaxed lifestyle than that of the UK.
My Oncologist looked at the veins in my hands and thought they would cope. Unfortunately, they were hopeless from the very first chemotherapy session. She was avoiding the PICC line as it's an infection risk and the weekly flushing nuisance. She did give me the freedom to do my own research and decide for myself after last week's session and I appreciate this approach. Fortunately my Oncologist has a very patient centred approach, listens and never overwhelms me with her own opinions. She has a good sense of humour too - always a bonus.
Thank you for your good wishes for my final infusion of FEC. Who knows what T will bring? I'm hoping to be more fortunate with side effects than you and Mary have been. I agree, the impact of these poisonous drugs must do a great deal of long term damage, I don't feel that I have any real choice at the moment though.
Many congratulations on being over 13 years clear. Your story will do a great deal to inspire others - the more so, since you didn't get off to the best of starts. There must be so many of us who ignored the initial lump, myself included and, then have all the 'what ifs' to deal with along with their diagnosis.
Love,
Gill X
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Hi Susie and Sylvia
Congratulations on your milestones and especially NED. It's the end goal. Xx
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Dear All
This is the website for the Add Aspirin trial, if you're interested. It's being done internationally so will hopefully provide answers.
http://www.addaspirintrial.org/
Susie
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Hello HelenLousie,
Thank you for your kind words. I do hope all will continue well with you.
Please keep us informed of all aspects of your Xeloda treatment.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your kind words.
I do hope all will go well with the rest of your chemotherapy treatment and that it will all be over in a few months and that 2019 will be a good year for you.
I do not miss Canada and am glad to be in my own country, even though it seems to be in deep crisis. I did like the quality of life in Canada and that quality I think came from the fact that it is a huge country with a low population. I do not know if it is the same now. What I did not like was the climate and the materialism, but we have that materialism here as well. I did like Canadians very much and liked the fact that they had pride in their country. I also liked the state health service from the little I had to use it and liked the fact that it was not overwhelmed. I do not know what it is like now. I do keep in touch with some people over there, so do get news from time to time.
Keep looking forward with optimism.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your kind words. I do hope you have a good Thanksgiving Day and I shall be thinking of you.
Raymond and I have appointments with the hygienist today and I shall try to bring up the Ozone word with regard to dental treatment. I have discovered there is one of these dentists in Exeter, but it is quite expensive.
Have you any thoughts on Chris Woollams email?
Love.
Sylvia xxxx
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Hi, Sylvia and all here,
It seems odd to me that you would have a dentist appt. today, because for us Thanksgiving is such a big holiday. I have reminded my self to be thankful, I do try to be year-round, but sometimes I forget.
I heard someone say on the radio yesterday that even though we are inundated with bad news, immense materialism, and feuding groups of people we should still realize that we in the US, Canada and UK are very lucky to live with electricity, clean water, modern conveniences, easy communication, easy travel and better healthcare, comparatively speaking. I think we do take all these things for granted, and I fear that young people, having never known anything different, really take these things as the norm. Even when you and I were growing up, these things were not the norm.
Yes, I am thankful for many things, and for family and friends, and all of here on the thread and for the fact that we are here at all. I feel quite close to you all, we share many personal moments and I feel very connected.
Happy Thanksgiving!!
Love, Mary
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Hello Mary,
Thank you for your post and your wise words. I am posting this card because I want you to know that I think of you as a good friend and you have given me a lot of help in making this thread so special.
I also wanted to wish all the American ladies on the various threads, as well as on here, a Happy Thanksgiving. We breast cancer patients know that we have a lot for which to be thankful.
Everything went well at the hygienist's today. I did ask about Ozone dental treatment but she said she had never heard of it. She did tell me that whales can grow back teeth as they fall out! I thought to myself if they can do it why cannot we? I shall tackle the dentist when I see him in February!!
it is very cold here today and I was glad to get back indoors.
Love.
Sylvia xxxx
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Hello everyone; I am just checking in to see how you all are. The last three months have been SO busy with projects and funerals to go to and another recent CT and Bone Scan; the CT scan came back as negative for disease, and my oncologist did not anticipate anything with the Bone Scan; in fact, she said she thought they were overstating the possibility of metastases in the spine, as she believes it is calcium build up because of osteoarthritis. I had the Scan yesterday and she said if there was no change, she would not order any more. So my "happy news" is that I am 16 months past surgery and 11 months past radiation therapy, and everything seems to be good. That doesn't mean I won't worry about what the next scans will show, but at least I can "rest easy" for a little bit. This has been a crazy week with four appointments in four days, but hopefully we can sit at home for a while and have some quiet time. Hope to have some free time to catch up with everyone these next few days. Thinking of you all, and hoping those of you who are celebrating Thanksgiving today have a very good one.
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Sunrise this morning.
Hello Nancy,
Thank you for your post. It is always nice to see our friends posting. I will post later.
Love.
Sylvia xxxx
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Sylvia and all,
In case you hadn't seen it, there is another neuropathy article on the site. Go to the CHEMOTHERAPY forum, and look for TOPIC: BCO Podcast: Neuropathy: Causes and Treatments. It is just near the top of Chemotherapy page, and put there by the Moderators. It also has a transcript, so you can read it, which I did.
Most of it is information we already know, but this doctor explains the difference between damage from the taxanes, and damage from platins, the platinum drugs. And there is a difference, they affect the nerves in different ways. Also there is difference between nerve damage from diabetes and leprosy, but the interviewer is very good, he keeps steering the doctor back to Nerve damage from chemotherapy.
He also says there is some evidence to support cold-capping and icing feet to protect from nerve damage, the jury is still out but he thinks there is some value there.
Talk later, Mary
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Hi Mary and everyone,
Just a very quick note.
I've been researching icing hands and feet myself. Whilst there is no hard evidence yet, it doesn't appear to be harmful either. Hence my frozen pea experiment beginning on December 30th. I'll be sure to report back on the eventual outcome.
I hadn't noticed the article and will be reading it over the weekend. Neuropathy is a particularly nasty side effect.
In the meantime, to all my newfound and very supportive friends here, have a very happy weekend.
Love,
Gill X
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Gill,
I did purchase the icing socks from Amazon, rather pricey. They were very comfortable, but I think it was just too late. I was given Adriamycin, Cytoxan and Taxotere together in the first infusion I had, and the damage was done right away, and I noticed it about 2 weeks after my first dose. After that dose the drugs were split up for me, so I could tolerate it. So you see I wore the icing socks, but can't really report success because I didn't start using them until my second dose of Taxotere. I should have had them before the whole thing started, I just didn't realize neuropathy happened so often to chemo patients.
Have a great weekend!
Love, Mary
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I asked the head chemo nurse if there was any point in icing or heating my feet before Taxanes and she said none at all. My toes are slightly numb since the final infusion but nothing that gives me any bother.
Susie
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hi everyone
Back from an amazing holiday in Thailand Hong Kong and Kuala Lumpur. It was great to get away and forget for a while. Doing ok but still get jointpain and stiffness which scares me. Had some amazing Thai massages and they helped heaps and got the stiffness and muscle knots out. Been working hard on stretching and exercise and it seems to help but I’m still having trouble with muscle tightness and tingling from the neuropathy. Doing well so far with my masters and im wait for the results of a pharmacology exam I did last week in Adelaide. Really enjoy the study it keeps my mind away from that dark place and the terror that keeps hanging around
We have some really strange weather here coming into summer and it’s still quite cold and windy. The drought has been a problem and I have uploaded a couple of pics of the dust storm last week that could apparently be seen from space. Stay well
Much love
Kath
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Hello Mary, 53Nancy, Kath, Gill and Susie,
I have just been reading all of your posts and they are always interesting. Kath, many thanks for the photographs. I shall have more time tomorrow to post. I usually like to do the thread work first thing in the morning. Today the hours have just disappeared on me. We had a nasty storm last night and today has been gloomy and wet. Anyone who has some nice photographs that will bring good cheer please post.
Best wishes to everyone.
Love.
Sylvia xxxx
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Looks like dust storms. We have had them recently in Sydney and some way south. Incredible pics thanks Kath.
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Hello HelenLouise,
It was nice to see you on the thread. I do not like the look of those dust storms. It reminds me of the sand storms that I remember from when I was teaching high school in Morocco for three years.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your post. It sounds as though you had a good holiday.
I was glad to know that you are doing well with your Masters and I am sure you will get good results from your pharmacology exam. All these things will keep you busy and keep your mind off aches and pains.
Thank you for the photographs. It seems that we are all experiencing strange and unusual weather. Those dust storms sound awful.
Take care.
Love.
Sylvia xxxx
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Hello Susie,
I asked my oncologist about ice caps for the head and she told me that she was against icing as she was afraid of infection.
From what I have read about icing is that it is very uncomfortable and does not always work.
Keep well.
Love.
Sylvia xxxx
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Hello Nancy,
It was nice to hear from you as the Canadian contingent has been quiet recently.
It was good to read that you have had all positive results from your scans.
I do hope that you will now be able to relax and enjoy your days. I have always found it is just best to take one day at a time.
I hope you will manage to catch up with any missed posts.
Wishing you and yours all the best.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post of November 23rd. I have been to the Neuropathy section that you mentioned. I have made a printout of it but I have yet to study it as I have had a lot going on.
I do know quite a lot about neuropathy as I have kept reading anything I could since 2005/6 when I discussed it with my oncologist when I mentioned about my feet and she told me it was from the taxane drugs and that there was no cure.
As I have said before, my GP confirmed what the oncologist had said and two podiatrists have said the same since then.
I am surprised that, knowing about the taxanes and neuropathy, carboplatins have been added to the group of drugs used in breast cancer treatment. I have seen combinations where patients are being given both taxanes and carboplatins. I shall talk more when I have read the information from the Moderators.
In the past I did ask my podiatrist about the difference between the taxane induced neuropathy and that connected to diabetes. I have a cousin with neuropathy in the feet and the problem still seems to be numbness.
My own gut feeling about neuropathy is that it cannot be cured, because the nerves have been damaged, so it is a chronic condition. I feel the same for lymphoedema. The lymph system has been damaged and that the swelling will always be there to a greater or lesser extent and that it is a chronic condition. I am quite lucky with my lymphoedema in the right arm. I do measure it from time to time and it is always the same whether I wear a compression sleeve or not. There is very little difference between the right arm and the left. In some places no difference, in others an inch.
I shall talk later when I have read the printout.
What do you think about the aspirin trial? I do not think I would like to be on 75 mg for five years and would be really worried about being on 300 mg for that time, and of course you do not know which one you are on.
Here all the talk is about the EU and Brexit. It looks as though Theresa May has given in to the bureaucrats in Brussels. I am waiting to see what happens now.
I hope you are having a good weekend. Keep well.
Love.
Sylvia xxxx
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Hello Gill,
I just wanted to say that I hope all will go well on December 30th when you start the taxane drug.
Let us know how you get on with the icing of your hands and feet.
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
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Hello Sylvia,
The ice cap is uncomfortable (you can hardly move your head) and adds at least an hour to each chemo visit. I lasted 10 minutes with it. Really not worth the bother.
Susie
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Hi Mary,
The research regarding neuropathy prevention and icing is too limited as yet, but I did come away from reading into it further, that, in general, it's looking positive. Detail is absent - how long to ice before treatment, how long afterwards, how cold and so on. The ice cap treatment comes up with more information, but the temperature remains consistent throughout. Cold gloves can't offer this consistency. However, I'll order some from Amazon and let everyone know the results of my very unscientific experiment. Frozen peas still remain my weapon of choice for foot icing.
I do think that Oncologists in general tend to avoid discussing the fact that whilst neuropathy can be a mild side effect, in some cases it can be extremely debilitating and life changing. I have an appointment with my wonderful Oncologist on 21st December and I'm hoping for a frank discussion about neuropathy.
Hoping the weather is now milder down your way. Keep warm, draw the curtains early and enjoy doing absolutely nothing that involves hard work. Winter has its upside.
Love,
Gill X
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Hello Mary and everyone else,
I have been reading through the copy of the information that I printed out entitled Neuropathy: Causes and Treatments by Michael Stubblefield MD.
I did find it very interesting but from the point of view of a newly diagnosed patient there is probably too much information. I thought it was a very good description of the body's nervous system in general, but not something that you really need to know.
I think what we need to take in is what we mean when we are talking about peripheral neuropathy.
"When we are talking about peripheral neuropathy, we are really talking about damage or malfunctioning of the peripheral nerve......"
The next important thing from the point of view of a patient is the following.
"In the cancer setting the most common cause of neuropathy is chemotherapies. So, things like the vinca alkaloid, vincristine, the taxanes, like paclitaxel (Taxol) and the platinum compounds, like cisplatin, carboplatin, oxaliplatin".
From our point of view, as breast cancer patients, we are of course very interested in the taxanes and the platins.
We shall also be interested in whether this peripheral neuropathy affects just the hands or feet, or whether it can affect other places in the body.
I think the answer in the article is that it can affect other parts, but it is most common in the hands and feet.
To quote the article: "There are three major components to neuropathy: One is the sensory problems, and that is usually pain or the loss of ability to feel. Sometimes it is just numbness and tingling or tingling, which we call parasthesia. There is also the motor component – the ability to work the muscle".
He points out that with all of this is problems with the hands and feet. He further points out that the autonomic nervous system, part of the peripheral nervous system, can also be damaged.
Apparently the platinum drugs damage primarily the sensory nervous system, causing pain and loss of knowing where your joints are in space, but your muscles will remain strong.
Those of us going through breast cancer treatment need to know about the effects of the carboplatin on the sensory nerves, because they are used in breast cancer treatment. I would think that all of you newly diagnosed and/or going through treatment with carboplatins, would want to know all this and discuss it with your oncologist if it is included in your treatment. The same goes for the side effects of the taxanes on the peripheral nervous system.
From reading all of this it seems to me that in addition to all the other side effects lack of balance could be an issue.
The next interesting thing is about how these chemotherapy drugs damage the nerves. Apparently the drugs that we are most interested in with our breast cancer, the taxanes (paclitaxel (Taxol) and docetaxel (Taxotere)) are what are called tubulin inhibitors.
Tubulin are little proteins that clump together and pull things along the nerve. The taxanes poison your body's ability to make that tubulin. Because of this, to put it simply, it somehow kills the cancer cells because it stops the cells dividing and when they cannot divide they give up and die. This is what we call apoptosis. Unfortunately this process also kills healthy cells, which is why we feel so unwell.
As for the platinum drugs, it is different.
"The platinum drugs are very different. The platinum drugs do not damage the cancer cells or kill cancer cells in the same way. What they do is they get into the DNA of the cell, and they start screwing the metabolism of the cell".
It looks as though these platinum drugs damage the sensory nerves and not damage the motor nerves. Because of this you often get painful neuropathy. You may get loss of sensation and you may have trouble walking.
To sum up, these taxanes, the tubulin inhibitors, and platins, the DNA modifiers, cause very different types of peripheral neuropathy.
It seems the simplest way to explain this to friends and family when they ask about peripheral neuropathy is to say "My nerves do not work properly as a result of my cancer treatment".
It has taken me a long time to go through this paper and I still have not quite finished. I am going to post this and take a break and finish as soon as I can.
It is the most miserable awful day here in Exmouth. I have never known so much rain!
Sending everyone best wishes.
Sylvia xxxx
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Hello Sylvia,
Thank you for your good wishes for December 30th as I begin Taxol. Like you, I feel that once nerves are badly damaged they will not repair themselves. Mary's story and your own will at least encourage women to ask their oncologists for the full picture. This shouldn't be glossed over, even if, for most of us, it's Hobson's choice - risk of breast cancer returning or coping with neuropathy.
Brexit, as predicted, has been poorly negotiated from the beginning. Europe is facing massive problems, with France, Germany and the Netherlands trying to hold it all together. My son cruised around Greece last week and reported that he'd never seen a European country in such dire straits. Everything in a state of disrepair, shops and cafes empty. The Greek islands must be solely reliant on Summer tourism to stay afloat.
I noticed that the BBC were reporting that we haven't made the progress in cancer treatment that was hoped for. It seems that the speed of diagnosis is critical to successful treatment and it's delays here that are the problem. I haven't experienced this. The delay between diagnosis and treatment is the issue that I hear most about. Without a meaningful cash injection on an annual basis, delays in surgery and chemotherapy will just become worse year on year. I do see a considerable amount of money wasted too. Many, many invented job titles which come with an over generous salary are a real drain on funds. Modern Matrons absolutely everywhere while nursing in a meaningful sense has been cut to the point of making hospital stays a worrying rather than healing experience. As always, those doctors, nurses and others on the frontline carry on doing the best they can.
Uplifting to see photos on the thread. Life is, after all, full of good things for many of us. The world is also full of kind and generous people. Easy to forget when reading the newspapers. I'm off to do something cheerful for the rest of the day.
Take good care of yourself and Raymond.
Love,
Gill X
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