Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary, again,
Thank you for your next post saying that you got your mammogram results and that all is clear. You must feel relieved. I remember so well all the anxiety I went through during those ten years of check ups and some mammograms. There is such relief when you are told all is well.
I was also told that I have dense breast tissue and they seem to expect this more in younger women. I think it is perhaps due to the fact that neither of us has had any children, but it is just my own opinion.
I was surprised that you are able to have an annual MRI scan. I am not sure whether that would be offered here under the NHS. I have never had and MRI can for any reason, but for 63 years of my life I never had any health problems until I was diagnosed with breast cancer in June 2005.
We have another mild day in Exmouth and there is a feeling of end-of-season, although this week is half term in the schools so there will be a bit more activity.
I am listening to the world news with a sense of bewilderment.
Love.
Sylvia xxxx
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Hello Susie, Nancy and Gill,
Thank you for your posts. I am just going to take a break and then I shall answer them.
Best wishes to the three of you.
Love.
Sylvia xxxx
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Hello Susie,
I did some research about damaged nails, nothing much came out of it, but some women recommend breaking open a vitamin E capsule and massaging the oil into the cuticle. It wouldn't help much with the already damaged nails/regrowth, but might work later on. It would increase the blood flow at the very least. Annoying that new growth looks damaged for now. Apparently good fingerails take at least six months to reappears. I'm going to ice mine and hope for the best.
Gill
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Hello Susie,
Thank you for your post. I was interested in what you said about your fingernails and toenails. Have they started to grow back at all? I do know that this is quite a common side effect of chemotherapy and from what you said it seems to be specific to the taxanes. They do not seem to have a good record since the taxanes also cause lymphoedema and peripheral neuropathy. We are not supposed to give advice, but I did see in the latest book on breast cancer that I have been mentioning, that "A nail-strengthening polish can help stop your nails feeling sore". In the chapter on chemotherapy, under Hands and Feet, it says "your nails will soften, crack, split or even fall off, and you may get brown spots underneath them". I was very lucky in that I just had one toenail turn brown and no problem with the hands. During treatment I kept hands and feet well moisturised with an unperfumed moisturiser.
I am sure you will do what is right for you and I hope some people will post in saying what they did.
I do hope you are having a good weekend and I do hope some more tips will come in.
Love.
Sylvia xxxx
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Hello Nancy,
It was nice to see you posting. We now have four Canadians here, adagio, Moth, Cheryl and you.
I regularly look at the weather forecast around the world on TV5, which is in French. I saw how cold it was getting out on the Prairies. I have an old school friend who went off to Canada in about 1963 and has remained there ever since. He is now in Saskatchewan with his wife and family. I think he started off in the Yukon!!
I can understand how you are getting your garden ready for winter.
I found it tough enough getting through the winter in Montreal, Ottawa and London, Ontario. I do not know if I would be tough enough on the Prairies!
I was glad to know that you are keeping busy. Live each day to the full.
Love.
Sylvia xxxx
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Thanks Sylvia & Gill,
I shall try a nail hardener. The fingers/nails aren't sore but they look quite bad at the moment. Even the ones that didn't fall off have white stripes across them. They are growing, quite slowly, but the new growth is not as strong as I would like.
Mostly I shall just be patient, I guess.
Susie
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Hello Gill,
Thank you for your latest post. With reference to the breast care nurse, she will of course not have any authority with the oncologist or breast cancer consultant. She is really there so that you have a contact with someone at the hospital when you are at home between treatments. I had a good relationship with my one and if I was concerned about anything I would phone her and often leave a message as she was very busy. From time to time she would phone me to see If I was alright.
It is good to know that at the hospital they are being efficient and doing what needs to be done before you start treatment.
I do hope that the blood tests came back fine for you to start your chemotherapy. Blood tests will be taken before every session to make sure there is no problem with red or white blood cells and that kidney and liver functions are fine. My bloods were taken the day before my chemotherapy was due, by a District Nurse, who came to my home in the morning and got the blood test sent off to the hospital so that they were there when I arrived for my chemotherapy session. Sometimes on the day of the chemotherapy I would see my oncologist or her Registrar to see how the tumour was shrinking. Remember, I had six months chemotherapy before surgery.
It is good that you have had an ECG as well. That is in line with procedure to see how your heart is, because chemotherapy drugs such as epirubicin (Ellence) and doxorubicin (Adriamycin) can affect the heart, as well as the taxanes, docetaxel (Taxotere) and paclitaxel (Taxol).
I was told not to eat any raw foods, so that includes salads. In the book about breast cancer that I am reading, it says the following in the paragraph Foods to avoid when your immunity is low: "You are at risk of getting an infection from contaminated food. You should avoid food that is out of date, in damaged packaging or loose (such as bread rolls, salad from salad bars, food from deli counters and 'pick'n'mix' sweets that other people may have touched".
I was told simply not to eat any raw foods.
You might want to buy this latest book on breast cancer as a way to guide you through your chemotherapy treatment. There is so much detail in chapter 10, Chemotherapy (it goes from pages 132 to 154 and is in easy to understand language) by two expert doctors and breast cancer survivors who went through it all.
As for the wig, you should be entitled to get any synthetic wig you like on the NHS, unless the rules have been changed.
We shall be thinking of you on Thursday and wishing you luck with your chemotherapy. Tell yourself you will get through this and do not put side effects to the front of your mind.
If you need any more information please let us know. We are here for you and we shall support you all the way.
Love.
Sylvia xxxx
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Gill,
Have they said if you will be having injections to maintain your immune system? Don't worry if not: I think I only learned about it the day of my first chemo session!
Susie
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Hi Susie,
The nurse did say that I might need to inject myself in the abdomen if my immunity became too low, but Injections don't seem to be given as a matter of course. It seems inevitable that my immune system will be compromised though.
Hope the nail hardener works.
Gill X
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Hello Mary!
Thank you for saying hello , I’m sorry I am not quick to reply , I have two children , ages 10 &12 , they are both in dance , so between that and school studies we are sometimes short for time. I have been reading some posts about possible hair treatments that may be beneficial, I will keep searching.
I read your husband was ill at the time of your diagnosis, I hope he is better now , that must have been a difficult time for you. Do you have any side effects from your lymph node removal ?
Nice chatting with you !
Enjoy the week
Cheryl
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Hello Gill,
It sounds as if the prescription of Filgrastim injections to maintain the immune system is a bit of a postcode lottery. They do have their own long list of side effects, though I didn't experience any that I noticed.
Susie x
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Hello Susie,
I'm going to ask about this on Thursday. You're right about the postcode lottery. I've found that I needed to do so much research of my own, along with reading the posts on here for information. My daughter's a doctor, but works in the home counties, much closer to London where facilities are so much better. She's appalled by my experience.
This country really needs to get its priorities right when it comes to spending.
Glad you have a good relationship with your radiographers. Makes a huge difference when hospital staff have a sense of humour.
Gill X
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Hi, Susie
I saw the posting about your toenails and fingernails being by turns brittle and too soft. I think as you move further away from the chemo treatment your body will fight to return to normal. How were your nails before?
Perhaps you could try to take some collagen protein as a supplement? I have some that is a powder that dissolves in a drink of some kind. I have actually not been using it but have been taking a bone-broth powder in soy yogurt lately. But then I try everything, it seems! The collagen protein should be good for hair and nails.
While I was on the taxotere, some of my toenails became loose. I put adhesive tape on them so they wouldn't fall off because I thought that would be painful. One day the tape fell off along with the nail(s), and underneath were nice new nails, and they didn't hurt at all. The nails have since come back as they were before, perhaps a little drier like everything else.
The nail hardener should work for now, to protect the fragile nails from more breakage while more time passes. Good luck with this problem!
Talk to you soon, love,
Mary
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HI, Gill
I did have the Filgrastim or Neupogen the day after every infusion, because my white cells became very low after every infusion, starting with the first one. I asked if I could just take the syringes home, administer it myself, and save driving to the Center, but it was not allowed. I think if your white blood cell levels go below a certain point, they will give you the injection, or allow you to give it to yourself. Like Susie, I did not have any side effects from this shot either, except I would feel better once the white cells started growing again.
We will certainly be thinking of you as you begin your treatments, and all the way through and out the other side. I hope you have smooth sailing, with few SEs!
Talk to you soon, love, Mary
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My nails were quite strong before and grew quickly, in that I always seemed to be cutting them!
First booster today. Much less uncomfortable as the machine is in a different position. Hurrah!
Susie
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Hi, Nancy
Good to see you on here! Sounds like you are really getting set for winter. I looked up average winter temps for Manitoba, and brrr that's cold. Sylvia was talking about you living in the Prairies, which also sounds like it's relatively flat land, which sounds like it could be also be very windy thus a big wind chill effect.
Good luck with your tulips! I was lucky enough to see the Amsterdam Keukenhoff Tulip Gardens in May, it was one of the most beautiful sights ever, just amazing. I didn't realize there could be so many shapes and colors of tulips.
Hope to talk to you again soon, love
Mary
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Hi, Sylvia
If I walk out my front door into my yard, I can just see my neighbors' houses, but we don't visit back and forth. I know them and they are all very nice people, but are mostly young couples with children who work in the nearest city, about 25 miles, and when they come home in the evening they are busy with children, tasks and whatever else. In the other direction is a retired couple, they also stay very busy, sometimes I stop and chat but not often. They are more likely to give me homemade wine than coffee or tea! Sometimes I think I should move to the city for more socializing, but truly, when I do have quite a lot of socializing I am glad to retreat to my Hermit-age so that idea never lasts long, not right now anyway.
I don't know if and when my medical routine will change. Right now it is 1 mammogram a year, 1 MRI a year on breasts, and also I get an MRI if I complain of new pain in any body part. I see the oncologist 2X a year. I see a gynocologist once a year, and she is the doctor who seems to order tests whenever she sees a chance, and orders me to get vaccines, (which I may or may not do). I have learned that since I turned 65 there is a whole raft of tests and vaccines that docs think are suddenly necessary, and I suspect also because going on Medicare Insurance means they are sure to be paid. My oncologist orders no tests unless I complain of something, only the mammogram and MRI.
I don't mind having an MRI, because they do not use radiation. They are a bit time-consuming, and it is very important to lie very still, they are also expensive. When I first finished chemo the oncologist ordered several of them on my spine, there was a suspicious area that they finally decided was a cyst. I have since had them on my knee, and my shoulder, and my brain, as well as my breast area.
I see my General Practitioner when I have symptoms I don't understand and think he can help, he has a country clinic as part of his practice and it's only 3 miles from my house. He is generally quite quick about seeing his patients as well, usually within a day or two.
I do not have any plans for the autumn really, just trying to keep up with things. I need some repairs on my farmhouse, it is hard to find someone to do the work on an old house. I also need some sprucing-up on my house that I live in, it is slow-going for me to get things ready. I just cannot do the physical work, inside or out, that I could do before chemo. Now it puts me in a lot of pain, it is very odd because it seems my body never gets used to the work as it should, even though I go at it every day. A few days work requires a day of rest.
I do think if we look at history the politicians have always been full of mad antics, it is just that now we hear about everything immediately. Anyone can post, or televise, anything about anybody in a blink of an eye, true or untrue! I'm sure life was more peaceful when there wasn't quite so much information to sort through.
Talk to you soon,
Love, Mary
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Hi Mary,
Once my white cell count falls below a certain level, I'll be given injections I'm sure. It's usual for patients to do these themselves at home, so that will save a journey.
Thank you for your support. I usually bounce back from health issues quite quickly, but my body has never met with full on chemotherapy in all its glory before! Hoping for the best though.
I absolutely see your point about the advantages of a peaceful, if a little isolated haven, versus the opportunity to socialise whenever you feel like it. We live in the marshes outside the centre of the village, surrounded by fields and only reached by a long farm track which threatens to ruin the shock absorbers of those wanting to call. On the other hand, the city is only a nine mile drive away. So, the best of both worlds. I've always loved the quiet life and my own space. However, my recent day in London has turned my head a little. All those theatres, museums, galleries and amazing churches to visit.....
Bye for now,
Love,
Gill
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Hi, Gill
So tomorrow is the day you start treatment, I think? We have a 7-hour time difference so sometimes it's tomorrow at different times! I was in Alaska in September with a 3-hour time difference, and my supposedly smart-phone has never gotten the time right since, I am still on Alaska time according to my phone. I suppose the fact I spilled water on it might have something to do with it.
The place you live sounds just perfect, near to town but not bothered by it. I am not crazy about drop-in guests unless they are family or close friends, they are used to seeing me in the old worn clothes I wear when I am working around house or outside.
I will be thinking of you tomorrow. The nurses always gave me Benadryl right off the bat, and that would make me sleepy and not care much about what happened next. You will have to let us know how things go.
Talk soon, love, Mary
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Hello all,
Last radiotherapy quickly and painlessly done today. Yabbah, dabbah, doo!!!
Finally picked up some nail-hardener from Boots yesterday. Think it's helping.
Susie
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Susie,
Whoopee!!!
Happy dance! Congrats on finishing rads and also on the good news with your nails getting tougher, a good day.Hope they just keep getting better!
Love, Mary
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Hello Susie,
I just wanted to say congratulations on finishing your radiotherapy.
You have successfully finished what I call your cancer journey. Will you have a summing up now before going on to the next phase, which is living life normally and to the full with the regular check ups going on from time to time?
I did see the two actors in that play you mentioned being interviewed on the television last week on the Andrew Marr show. It all sounded very interesting.
Have a good weekend.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your recent post describing the area where you live. I shall post later. This past week has been too busy for me with my duties here and in addition Raymond tripped over uneven pavements (side walks) in the town causing him to fall down and hurt his face. I have bought iodine patches at my local pharmacy to try to heal it. They seem to be working miracles.
I hope you have had a good week.
Love.
Sylvia xxxx
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Hello Sylvia,
I am seeing the oncologist a week before Christmas when I hope she will find me NED. I don't know if I shall be having tests before then. I'd have thought they'd give me another ECG and heart scan but I shall be seeing the chemo nurse on Friday ahead of my Zometa so shall ask her what to expect now.
I have been lucky enough to manage to maintain a mostly normal life during treatment and shall be building on that now.
That reminds me that a very dear friend told me that the reason I have had so few side effects is because of my 'positive attitude'. I smiled politely and changed the subject because I think that is such BS and implies that people who do suffer have only themselves to blame!
Susie
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Hello Mary,
I have managed to sit down to answer your post from yesterday.
I can understand that socialising can get to be a bit too much. I am not one for social chit-chat but do like deep conversations. I live on a long street but people do not mix that much. I do know all the people in my apartment complex and we are all friendly but we still like our privacy.
I am amazed at the busy medical routine that you have where you are. I rarely see my GP and feel I am better steering clear of all things medical and firmly believe that food is my best medicine. I have never had an MRI scan and I had just a CT scan and bone nuclide scan before and after my cancer treatment. I have had two bone density scans (DEXA) but that was many years ago.
I do not like the way the NHS here is trying to get almost everyone on some kind of medication. Recently in the newspapers there was a front page article about the dangers of statins which GPs seem to be dishing out like Smarties. The article was all about how they cause type 2 diabetes and have dreadful side effects. The big sell at the moment is the flu vaccine.
We put the clocks back tonight and there really is a feel of winter coming on. It is dark here by 6:30pm so tomorrow that will be 5:30pm.
It sounds as though you have quite a lot of hard work to do in your daily life.
As for politicians, I do not hold them in high esteem here. I think Prime Minister's Question Time is a farce. As for Brexit, I cannot believe what a mess it has become!
It is hard to believe what Saudi Arabia has been up to. The world is a mess.
That is about all for now. Keep well and take care.
Love.
Sylvia xxxx
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Hello Gill (Rosiecat),
I was just wondering how you got on with your chemotherapy treatment on October 25th when you started it. I do hope all is well.
Love.
Sylvia xxxx
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Hi, Sylvia
I am so sorry Raymond has tripped on the pavement and hurt his face, I'm glad your nursing skills are fixing things up. I assume he had cuts and bruises and looks a little rough for a while, good that the iodine patches are working so well.
I wanted to update you since my oncologist visit of last Tuesday. I had a mammogram the Friday before, it turned out to be normal, as I told you. Monday I had the blood draw that was an order from the gyno doc. It turned out to be normal, except my blood sodium is always low. I blame it on my dislike of salty food and my large intake of water. When I saw my oncologist she told me that since I will be 5 years out from diagnosis next February, from now on she will only see me once a year instead of twice, and she said I seem to be doing very well. That is music to my ears, I know that still anything can happen, but anything positive is good to hear! I do not see my General Practitioner often, but I do like that he is just a short drive away and if necessary I can even call him, he still will come to the phone and talk to his patients personally.
I have still not decided whether or not to have a flu shot, it is heavily pushed here. I have had flu shot for the last 10 years every year, and still about every third year I have gotten the flu. When I complain to the doc, he says but it might have been worse if you hadn't had the shot! They always have a comeback. I am considering not having one and seeing how things go, when I read the list of ingredients it is a bit scary.
I agree with you about the pushing of medications, I listen to a Doctor show on the radio sometime where different specialists talk on all kinds of medical areas. They sing the praises of statins and one doc has the attitude that statins are so wonderful that he wished it would be put in every city's water supply! When I read the list of side effects it is very worrisome, as I know many people who take them, including my brother.
Our clocks will need to be turned back next weekend, and yes, after that we will be dark about 5 PM by the end of November. Our Novembers are usually cloudy and gloomy, right now the trees are turning colors and the scenery is beautiful in many spots. I will try to get a good pic of that.
I will talk to you soon, best wishes to Raymond. He has an excellent nurse!
Love, Mary
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Maryna - so happy to hear your great news of all being well with your blood tests and mammogram. Going only once a year to see your oncologist is equally good news - that is fantastic.
I have never had a flu shot ever. It is also pushed heavily here and I know most of my friends get it and they think I am crazy for not getting it. Each to their own is my motto - I think we should do what we feel is best for us.
Regarding mammograms - I am over due for one, but I am seriously considering not having any more. My oncologist said once per year is the protocol, but when I discussed the low possibility of them actually causing cancer - she did not dispute that fact.
I find the self-care to be a bit of a balance act - I want to be diligent, but also do not want to be obsessed about tests etc. On October 31st it will be 6 years since I had my first visit with my oncologist and this was to talk about chemotherapy drugs - it seems so distant now. I am grateful that I am generally healthy just the little niggly things which to me are all part of the aging process anyway e.g. varicose veins getting worse, the odd actinic keratosis showing up (aging skin and also pre-cancerous), taking longer to get over a cold, healing of wounds are a bit slower (maybe that is due to chemo), daily activities take a little longer (slowing down).
I hope your brother continues to improve. I also hope your knee will stay calm.
I always enjoy reading your posts and the place you live sounds wonderful - a touch of rustic charm. I understand the demands of maintaining an older home and yard - the work is never-ending and always there - but it keeps us busy, which I consider to be a good thing.
Wishing you well and once again - thanks for sharing your wonderful news about your health.
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Sylvia,
So sorry to hear that Raymond had a fall - I hope that he heals well.
Thanks for all your work on this thread - it is such a vital connection when we are going through treatment. Like I mentioned to Maryna - almost 6 years ago I visited my oncologist for the first time - so much has happened in those 6 years - but I am filled with gratitude each and every day for the emotional strength and energy to get through the tough days. They are an almost distant memory now - although, they can be recalled very quickly.
Hope you continue to do well.
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Hi, Adagio
Thank you for acknowledging my good news! The funny thing is, I was glad to hear it from MO but yet......I had that little feeling again of being cut adrift into the big blue sea that I had when chemo ended; so glad to be going there less but feeling a little bit out on my own alone in the battle. In the scheme of things, it doesn't actually make a bit of difference!
Yes, the flu shot, what to do. I got used to getting a yearly shot when my husband was ill, with his Emphysema and heart disease they said it was important for him and I was always urged to get one as well. The funny thing is that he never got the flu and I would get it about every other year. Even when I had it he never caught it from me. I'm told that this year the vaccine is more effective.
I have been going for mammograms yearly, I hope it's not too much of a cancer risk. My one remaining breast is small and it takes only a few minutes to have it done. I somewhat wish I had both breasts removed because they always tell me my breast is very dense which can hide a tumor, which causes the doc to order an MRI as well. I will never forget the day I found my own lump only 2 months after having a "normal" mammogram, so I do not have complete faith in mammogram alone.
As for all the other things, aching joints, wrinkled skin, slower-healing wounds, at the age I am it's hard to say whether some of it is from chemo or aging or probably, from both together. When my neuropathy was tested, that doc said that it would take me longer to get over things like a cold, or the flu. I had a cut on my ankle during the summer and it took a long time to heal, but I also have varicose veins.
My brother is still not 100%, his healing is very gradual too. My knee pain is activity dependent, also my knees don't like sitting with knees bent, and don't like standing. Requires constant adjustment! I will be able to try another shot in a couple of months, I hope the next one will be one of the good ones.
Like you, I like working outside and only regret I can't do as much as I used to do. Sometimes I think I should chuck it all and move to town, but I really think I would be bored not to have all the little things that cause me work and give me problems to solve!
Congratulations on your 6 years! It does seem surreal looking back, the things we went through. I knew nothing about what I was undertaking, I don't suppose many of us did. Yet here we are!
Thanks Adagio, lovely to hear from you
Love, Mary
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