Calling all triple negative breast cancer patients in the UK
Comments
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Well done with the first radiotherapy session, Susie!
Poor radiographers, stuck in that dingy basement. Doesn't sound fun. Glad that you will be able to escape the dingy basement more quickly next time...
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Hello Flora,
Thank you so much for sharing the names of your mother's Oncologists. I've looked up Dr. Mark Harries and he seems to be the right man for me. Innovative treatments and a bit of lateral thinking is just what metaplastic calls for. A friend, a retired medical Professor has sent my histology report to his colleague, a Professor of Oncology in Italy. But a second and third opinion would be useful as far as twisting arms at my local hospital is concerned. My GP telephoned this afternoon and is supporting me. She also said that I could change hospitals and go outside the county if needs be. Things are moving in the right direction.
I did wonder when you posted saying that your mother had originally been denied chemotherapy, if this decision had been based solely on age. I'm 63, but certainly don't feel it and want whatever's going. Ageism has no part in the NHS. All life is precious at whatever age.
Your Doctor's advice to your mother seems sensible, she's suffered a great deal of trauma and needs time and space to recover and gain some weight.Hopefully, Pacliotaxel will be kinder. I'm delighted to learn that 2 good doses of AC will reduce the risk of recurrence. It's something to consider for people who are finding chemotherapy intolerable. Metaplastic cancer often show a full response during the first few treatments, then peters out to little or no response. A few strong doses will be of some benefit at least.
I've been eating so many blueberries since my diagnosis when I should have been eating blackcurrants. My blackcurrant harvest this year was the poorest yet. I'm sure I can lay my hands on some frozen ones. I need to do some more reading on doable cancer diets.
Best wishes to your mother, hope the Autumn weather holds out so she can carry on pottering in the garden for a while longer.
Gill X
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Hello Susie,
Hammersmith sounds a bit grim. Somehow I always imagine radiography departments to be modern and pristine, full of new equipment. I do think it might be a bit boring being a radiographer. Far too technical and lonely for me.
Anyway, thats one down and out of the way. Good luck with the rest.
Gill X
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Hello Gill,
Yes, the machines at Hammersmith are older than the ones at Charing Cross, more like the picture that Sylvia posted recently.
I'm 63 too. 1955 was a vintage year.
Susie
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Hello Mary,
I am posting to say that I hope all is well with you. I have missed you on the thread in the past few days.
I have been reading the overviews on Cancer Active about radiotherapy, chemotherapy and immunotherapy. There is quite a lot of detail so I need to go through them more carefully. On the radiotherapy sheets the following titles are of great interest.
20 tips for people having radiotherapy.
1. What is radiotherapy?
This is followed by the 20 tips for people having radiotherapy. In this there are useful questions for asking your consultant about radiotherapy treatment.
On the chemotherapy sheets, the title is:
Here are 10 ways to improve the results of your chemotherapy while reducing the risks and severity of potential side effects.
The sheets on immunotherapy have the title:
Cancer Active immunotherapy review – the new frontier. This is all very interesting.
I do hope you are well, that your brother is making good progress and that your pains are improving.
Love.
Sylvia xxxx
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Hello Flora,
Hoping that your mother is growing stronger and more confident as each day passes.
Just to let you know, I've emailed Dr. Harries' secretary - impossible to get through on the telephone - and asked for a second opinion. Fingers crossed that he'll have the time.
Gill X
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Hello Flora,
Thank you for taking the time to give me the name of the drugs to which your mother was allergic. I have looked them up in my BMA Guide to Medicine and Drugs, as I am always interested in what the experts have to say about drugs. I saw for Metoclopramide that under common side effects it has nothing, but under rare it has drowsiness, restlessness, diarrhoea, muscle tremor, rigidity, muscle spasm of head or neck, and rash. It does say that for a patient over 60 a reduced dose may be necessary. It further says the drug has powerful anti-emetic properties and its most common use is in the prevention and treatment of nausea and vomiting.
As for the drug Ondansetron, it says it is an anti-emetic used especially for treating the nausea and vomiting associated with radiotherapy and anti-cancer drugs. The common side effects are constipation, headaches and a warm feeling in the head or stomach. The side effects listed as rare are palpitations/chest pain, seizures, muscle stiffness, wheezing/itchy rash, swollen eyelids/face/lips. It says there are no special problems for people over 60!
I do hope your mother is slowly recovering and I hope she will not be put back on chemotherapy until she feels strong enough to cope. Judging from the various experiences of people on the thread, the taxane drugs are not the easiest to deal with, whether it be paclitaxel (Taxol) or docetaxel (Taxotere). They do cause lymphoedema, according to what I have read, and my oncologist said the docetaxel with which I was treated definitely caused the peripheral neuropathy in my feet.
Sending you and your mum my best wishes.
Love.
Sylvia xxxx
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Hello Susie,
I was glad to read that you have started your radiotherapy and I do hope all goes well. Keep us informed.
Love.
Sylvia xxxx
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Hello Ellen (ellewebs),
We have not heard from you for some time, so I was wondering what is happening with your mum, who is 81. Is she going through chemotherapy and if so how is she?
We hope to hear from you.
Best wishes.
Sylvia xxxx
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Hello Gill,
I do hope you manage to sort something out and that you get the chemotherapy treatment that you want.
Sending very best wishes.
Love.
Sylvia xxxx
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Hello everyone,
I do hope that we shall hear from all the members of our group soon, as we have to have a two way relationship to keep the thread going.
Hello to Kath, CocoonCat, HellenLouise. 53Nancy, Moth, and adagio, Marias, Hanieh, Val and Gina.
If you have decided to move on, please let us know.
To Monica, how are you getting on with wearing that boot?
Best wishes to all.
Sylvia xxxx
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Hello Sylvia,
I was just thinking about cocoonCat and wondering what happened at the second opinion she was going for. Hope the way forward is clearer for her now and that she's been able to regain her confidence.
I guess many of us here on the thread will be thinking of her and wanting to offer support.
Love,
Gill X
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Hello Gill,
Yes, I hope we shall hear from CocoonCat soon to see how things are going. I am sure she will appreciate your support.
I am also wondering what is happening with Ellen's (Ellwebs) 81 year old mum and her chemotherapy treatment.
We have not heard from Sarah (LoveandLight) in a while and she was also supporting her mother through her treatment.
Thinking of you.
Love.
Sylvia xxxx
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Hello Sylvia,
I do think that it's helpful for all of us to hear from as many different people as possible.Everyone has their own unique journey and this can often inform our own treatment choices and help us to find workable solutions to problems arising after surgery and chemotherapy.
I have now read many of the posts from the earliest days, some are very moving and somtimes heartbreaking. All are informative and very supportive. I believe that those who visit this site will be considerably better informed about TNBC than those who don't. Maybe this site has helped to save lives? Certainly, there's a 'can do', positive theme here.
I can honestly say that I was filled with despair when I first visited this thread. Soon pulled myself together once I felt supported by those with real experience of breast cancer, from diagnosis through treatment to getting on with life again.
Love,
Gill X
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Hello all,
I have two days to go and I will be finished radiotherapy. Yipee!!I have become very red and lumpy across the chest, above my clavical and on my upper back. Close to blisters and very itchy at night. I will be very glad when the effects of the radiation subside which I expect will be in another weeks or two. In the interim I am using an array of creams for relief and rub when I can't resist, definitely no scratching.
Have made it to the second round of Xeloda on a 3/3 dose. In my second week and so far so good. Even my finger tips look less ravaged. So fingers crossed there. My oncologist has confirmed it will be a six month regime regardless of how many extra weeks I need off. So all being well my treatment will finish in February.
Back to work on a part time basis is the plan. Meeting with management to formalise it next week and will start back week of 22nd Oct. So (a little bit nervously) looking forward to that.
I hope those of you in treatment are faring well and those of you through treatment are enjoying life to the fullest.
Xx
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Hello Flora,
I have an appointment with Dr. Harries at the new Cancer Centre at Guy's on Monday afternoon.I'll let you know what he suggests.
I'm treating myself to some sightseeing and culture whilst I'm down there, so hope the good weather holds.
Best wishes to both you and your mother.
Gill X
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Hello Helenlouise,
Congratulations! Guess you're bound to feel a bit apprehensive after being away from work and needing to stay focused on your treatment. Until I had cancer myself, I hadn't quite realised that it just took over and I suppose that we all have to find our new normal - for a while, at least.
It must feel amazing to have climbed this huge mountain and almost reached the top.
Be kind to yourself when you return to work and have lots of fun and 'me time'.
Gill X
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Hi, Sylvia
It seems when I return from a trip, I play catch-up for weeks; first catching up on rest, then on obligations, social events and chores. The weather has been dry and I finally have had a chance to get a grip on weeds, flower beds, and outside chores in general. I have been to a wedding and a funeral, and had a weekend out with girlfriends. I have felt well, except today I am quite achy and tired from the work of the last 2 days. I wish I had a massage appointment today but no such luck! I still do have things to do; one is dig out some dirt from around one of my basement windows, it is a recipe for water leakage.
I have been trying to also catch up with reading all the posts; there are so many people here now going through different stages of treatment. It amazes me how much more information they have from their doctors than I had, and that was only 4 1/2+ years ago for me. Immunotherapy wasn't mentioned at that time, platins were not mentioned either. I know now that my MO put me on a regimen of DD (dose-dense) therapy, that only lasted one session because I couldn't tolerate it. In hindsight I would have been better off with AC first, and then the 12 smaller doses of T.
I had not really heard much about metaplastic BC until it was mentioned here by Gill, and then Monica posted that she had also had some features of metaplastic in her tumor. I remember the radiation doc and the surgeon told me that my tumor had "fingers", that may be an indication of some other type of feature of the tumor I had, but I wasn't informed of what it meant except that she had to do a mastectomy instead of lumpectomy.
I did go to Binney's blog, and read the post called "My Fat Arms." I thought it was a very good piece of writing, explanatory and funny too. I found there are a lot of writers there. I did look at Chris Woollams post, didn't see too much that was new,
I read your and Kath's posts about the flu vaccine this year, I will be seeing my MO this month and I'm sure she will be pushing the flu shot. I have heard it's supposed to be more effective this year. I know you are probably not planning to get it, after what happened to you.
I have been keeping up fitfully with a online series on Alzheimer's that was put out in much the same format as the Truth about Cancer series. One new episode every day for 10 days and then you are asked to purchase the series on DVD if you desire. I would turn it on some mornings and try to listen/watch. In a nutshell, a lot of it was emphasizing lifestyle, diet, exercise, sleep and how the right plan helps your brain. However, this morning was the last episode, and the most amazing. A doc was on telling the moderator that human trials will start soon using a substance meant to reverse and prevent Alzheimers. and subjects will be given 1 injection. This injection, of a substance called telemorase, will hopefully reset the glia cells in the brain that protect and repair the neurons. Ideally 1 injection will reverse and/or prevent the deterioration that causes Alzheimers, Parkinsons, and other brain diseases, and it will work well for 5 to 10 years and then the process of an injection will be repeated. Think of the possibilities! This substance is made from an herb, I believe of the astralagus family. The doctor presented this information in a thorough way, and made it understandable. I guess now we wait for the results of the human trials. It was also mentioned that it will be very expensive, at least for a while, but not when put up against the cost of caring for an Alzheimers patient for up to 10 years. Anyway, the series is over now, it was nice to hear something hopeful about that scourge of a disease.
My brother drove to my house Monday, he has started driving a little bit, but is still feeling weak and not having energy. He had therapy sessions earlier in the day so was having more pain in his neck. I think it's going to be a slow recovery, he is getting impatient with it.
I had better close for now, and I will talk to you again soon.
Love, Mary
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Hello Susie,
You're so right, 1955 was the year that would lead to some interesting times. You were so lucky if you were living near London as a teenager in the swinging sixties. I lived in Leicester at that time and by the end of the sixties would visit London whenever I could. Me and our gang of girls would just stand on the Kings Road and stare at all the bizarre clothes and shoes people, not much older than us were wearing. We weren't well off, so improvised, white lipstick, huge plastic earrings, pink in my case, and our knee length skirts rolled over a few times at the top. Must have looked as though we all had a huge spare tyre.
Hope that after the tedious first radiotherapy treatment, all is now running smoothly with no more numb arms.
Gill X
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Hi Sylvia,
We talked last month about the lymphedema class I attended. Although I do not have signs of lymphoma (yet), I received interesting information and handouts.
I particularly liked the suggested exercises and the tool we got to self measure arms to compare and note changes.
Thank you for inquiring about how I’m doing with my “boot”. I’m getting around fairly well but will have to wear the boot for another month.
Hope all is well with you. I am enjoying the fall weather in Northern California. We even had a little rain last night. Probably not enough to make much of a difference, but it’s a start. We certainly don’t need yet another drought year!
Monica
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Hello all,
Another quick recommendation from the Maggie’s healthy eating workshop I attended.
A book by James Wong: how to eat better. It’s all about how you can make every food you it into a “superfood” by maximising the nutrition through correct storage, preparation and choosing one type over another.
For example: leave mushrooms on your windowsill for 5 mins, and it will really pump up their vitamin D levels; choose Braeburn apples for more antioxidants than any other common type; eat seeded grapes and leave the skin on potatoes, carrots and even kiwi fruit for maximum Vit c, carotenoids etc. All v interesting..,
Gill- so pleased you’re seeing Dr Harries. We found him pleasant, clear, thorough and definitely up to date on the latest findings re: triple negative cancer. He also put us onto the oncologist my mum’s now under in Oxford, who we may not have found otherwise.
I am actually considering getting a second opinion from him on what my mother should do now, given all her problems with the chemo. I feel that whenever a patient isn’t typical, either because their reactions to treatment are extreme or there is something atypical about their presentation( as in your case), second opinions are all the more valuable. I need to respect my mother’s wishes on this though - of course.
The Guy’s cancer centre is a rather amazing building, paying homage to the Pompidou centre in Paris( lots of pipe work on the outside!) . I hope you have a useful visit.
Anyway best wishes to all
Flora x
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Hello, Gill
The arms continue to be sore each session, I'm afraid. Still 3 down, 17 to go. Yesterday one of the machines was out of order so they were running late and I was stuck in the waiting room in my hospital gown for an hour. I'm just keeping my focus on the 26th when it'll all be over!
While you're in London, the Oceania exhibition at the Royal Academy is great.
Susie
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Your poor arms. Frustrating wait, I would think that with old machines, breaking down is to be expected. You'd think it would be more cost effective to buy new.
I'm going to Google the exhibition, thanks for the information. Strangely excited to be visiting London and actually having the time to look around instead of just changing trains. We visited Buckingham Palace three years ago, mainly to look at the art collection.
Hope you have better luck with the machine and your arms today.
Gill
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I did Aquacise this morning, which I'm told is okay so long as my skin isn't blistered. I figure that exercising and strengthening my arms will help. Came straight home for a bath.
Susie
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Hello Gill,
I do agree that it is helpful to hear from as many different people as possible. It is good to know their experiences and also to keep up-to-date with any new information or experience that they may have.
I was glad to know that you have been reading some of the posts from the earliest days. We have had very nice people from the beginning and I do like to think they have all survived. If you come across any of my earliest posts when I said what homoeopathic medication I was prescribed for each stage of my cancer journey, it would be useful to me, as I cannot remember those specific ones that I had as I went through chemotherapy, surgery and radiotherapy. I do remember taking astragalus and artemisinin (wormwood), prescribed by a well known herbalist while I made up my mind about treatment. For five years shortly after diagnosis I took mistletoe extract orally from the homoeopathic consultant. I still see these medications are being widely used.
You might want to read some of Dulcie's posts about 2012. She is the only person I remember on the thread who had metaplastic breast cancer and I think it had spread, and so was metastatic. She was from the UK.
I have always said on the thread to ignore all the doom and gloom about tumours with triple negative receptors and have said "be positive about being negative". I was always glad about this because I would have hated being on anti-hormonal medication for ten years, with all the nasty side effects.
I am so glad to know that the thread is helping you. I think, when we are first diagnosed, we all go into shock. I certainly was shocked and the people who knew me thought that I was the least likely person to end up with breast cancer.
Waiting to make decisions about treatment is a difficult time, but once you start treatment you are kept busy. It is a strange feeling when that journey comes to an end, because you feel cut off, but you then get into a routine of getting on with your life and getting used to regular check ups.
Wishing you all the best.
Love.
Sylvia xxxx
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Hello Helen,
It was nice to hear from you. It is good to know that you have almost finished radiotherapy. I was sorry to read that you have been having skin issues and I do hope that it will all heal up soon. I did read recently in an overview about radiotherapy that the radiation continues to work for about six weeks after treatment. You might be interested in having a look at it. It is on the Cancer Active site, Chris Woollams, under Health Watch, 20 ways to improve your Radiotherapy experience.
Have you had any other side effects from your radiotherapy?
Please try not to scratch your skin. What creams are you using? Aloe Vera gel is good, as is calendula cream. On my lymphoedema arm I have found Dead Sea Spa Magik Rich Moisturiser to be the best one for keeping my arm moisturised. I got it on line where it was somewhat cheaper than in the shop.
I was glad to read that you are coping with Xeloda. Are you suffering from any side effects?
I expect you will be glad to get back to work on a part time basis, but make sure you do not overdo things. I can understand why you are nervous about going back to work, but it will take your mind off breast cancer. Make sure you do not get stressed.
Take care and keep in touch.
Love.
Sylvia xxxx
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Hello Mary,
It was so good to see you back on the thread. It sounds as though you have been very busy.
Take your time catching up with all the posts. It is true that there does seem to be a lot more information about and you know that I think being informed is powerful, but I do wonder whether there might now be too much information, especially with the pathology reports. In the end we all go on the same journey of surgery, chemotherapy and radiotherapy, with little variation.
I was familiar with metaplastic breast cancer because of posting from Dulcie way back and because I remember years ago looking up all the different types of breast cancer. It is all very complicated because lots of tumours seem to be a mixture of breast cancers and we also have to remember that tumours mutate. As I have said before, my oncologist said that the triple negative tumour receptors may not have started off as such.
I was glad to know that you read Binney's blog and the My Fat Arms post. I agree it was a good piece of writing, informative and funny.
As for Chris Woollams, I found the most interesting was ticking on some of the linked features, especially 20 ways to improve your radiotherapy experience. I was particularly interested to read that clinical research in 2012 and 2013 has shown that Calorie Restriction Improves the Result of Radiotherapy. It is then added that Hyperbaric Oxygen Therapy and melatonin also improves radiotherapy. It further says that flaxseed, astragalus, milk thistle and mistletoe can be important adjuncts to radiotherapy and improved results and gave fewer side effects. Way back in 2005/6 and onwards, I took flaxseed, astragalus and mistletoe. I was interested to read that smoking can increase the dangerous side effects of radiotherapy. I do remember my oncologist telling me that you could get inflammation of the lungs through radiotherapy treatment.
This is why I always say that, even if radiotherapy seems easy and quick, it is not to be taken lightly as there are possible side effects.
You are dead right that I shall not be having any flu injections. On October 10th it will be exactly a year since I had THAT flu injection, against my better judgement, and two days later I had the swollen arm and lymphoedema!!!
I am going to end now because I need a break, but I shall get back to you about the interesting information on Alzheimer's.
Love.
Sylvia xxxx
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Hi, Monica
You have been very busy, what with your scans leading to biopsy and also breaking your little toe! I am so glad for you that the biopsy showed benign, and I hope your toe heals well inside your boot. I'm also glad you have your trip to Disneyland to look forward to.
It is strange how the neuropathy presents itself in each of us; in your case you didn't feel that your toe was broken. I also have neuropathy, but I do feel pain in my feet. What I don't feel is cold. My feet are always cold but I don't feel it unless they contact something warm. I remember being told some years ago to always wear shoes, even in the house. I do, and it has saved me from some pains!
Happy belated birthday, I hope October is a good month for you!
Talk later, love, Mary
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Hi Sylvia,
Thank you for your reply. I am using a Australian cream called Moo Goo skin milk (udder cream) made from natural oils and milk protein. It was recommended the last time I had radiation. When bought it this time there is now a large range Moo Goo products. On the areas that are threatening to break I am using derma-aid. I have some exit burn on my left shoulder. No other side effects aside from getting a tad fatigued.
Main side effect from Xeloda thus far is low neutrophils, cracking on my finger tips and tingling in my arms. I have felt a tad nauseated / reflux and some odd limb aches but am combating those with nexuim and panadol.
As long as I don't end up with broken skin in the affected areas and my Xeloda side effects don't get worse, I am all systems go to get through the last leg of treatment. February seems like a long way away but each day at a time.
Kind regards - Helen xxx
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Hi, Gill
I'm so glad you have an appointment at the new Cancer Center on Monday. We will all be waiting with interest to hear what you report. I thought too that TNBC always had chemo recommended as part of the treatment.
I saw that Susie commented about being born in '55, I am a '52 model. I smiled as I read about you and your friends mingling with the beautiful people in London in the '60s. Here it was "flower power" taking over, and as soon as I was finished with high school I began thinking I was a flower child too along with some friends, and tried to act the part. We also tried anything we could to dress the same as the sometimes grungy "real" hippies that we met, with long patched jeans, tie-dyed shirts we made ourselves and flowered skirts. I can just imagine you girls with your rolled up skirts and big hoop earrings!
Try and enjoy the rest of the week, since you have taken care of business and made an appointment for Monday. You are right, cancer will take over your life for a while, a break when you can get it is good!
Talk to you soon, love, Mary
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