Calling all triple negative breast cancer patients in the UK
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Hi Susie,
Housework not done, as advised.
Gave myself a Filgrastim injection this afternoon. Had to give myself a sharp talking to first. Stood with the needle hovering for a ridiculous length of time before stabbing and hoping for the best. Absolutely painless.
Just hoping that a low white cell count won't mean that chemotherapy will be cancelled this Thursday. I'm aiming to keep everything on course for a mid February finish. Hope to be up and running in time for March as I have three birthdays then, Michael's 66th, son in law's 34th and granddaughter's very first birthday. With any luck the pleural effusion will have cleared off by then.
Pleased nails are coming back even if they're doing so in their own good time.
Bye for now,
Gill X
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Hi Gill,
I was shown to do the injections by raising a little bit of belly flesh between thumb and forefinger and sliding the needle into it sideways. When I was in hospital having my knee replaced, though, the nurses seemed to favour the stabbing method with ... whatever it was they were injecting me with, can't even remember.
Well done on the housework!
Susie
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Hi Susie,
I think self injection is one of those things that seem like an ordeal the first time, but is easy thereafter. Couldn't help feeling quite proud of myself though!
Still following your housework advice. You just don't notice the dust after a while.
Gill X
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Hello Gill,
I was just looking once again at the latest posts and wanted to say that I do hope you are feeling much better now.
With reference to the antibiotics you will know that they can wreak havoc with the gut and upset the balance of healthy bacteria. You might want to take some kind of probiotic to restore the balance or you could eat plenty of plain soy Sojade yoghurt or plain soy Provamel yoghurt with live culture. Both are organic. You can get Provamel in Holland and Barratt stores and Sojade I have only found in natural food stores.
I am convinced that there is ageism in the NHS. I think the experts think that depending on your age they should be convincing you to get on long term medications, such as statins, which have nasty side effects. I do hope the generations coming forward will not look to doctors as if they are superiors. They should remember Hippocrates and the do no harm oath. I think in the past our parents and grandparents just did everything the doctor told them to do. I do feel that there is a condescending attitude to the elderly.
I do hope you will get some peace of mind about the pleural effusion in your chest.
Like you, I also have concerns about X-rays. As you probably know, I was diagnosed with breast cancer and an over active parathyroid gland at the same time. I had no symptoms of this parathyroid gland problem and had never been ill in my life until the breast cancer diagnosis. To cut a long story short, there is research connecting the parathyroid problem to breast cancer, but it is not clear which one causes what. My breast cancer consultant/endocrinologist told me that the non-malignant adenoma on one of my parathyroid glands predated the breast cancer. The research about all this also says that one could have caused the other, or that both could have been caused by childhood X-rays. I remember that children of my generation did get X-rays in childhood to look for TB.
I can understand that you do not feel like doing housework. Just leave it as much as possible and get yourself through this latest hurdle.
That is all for now.
Love.
Sylvia xxxx
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Hello Gill, again,
I do hope all will be alright for you to go ahead with chemotherapy on Thursday, but do not take any risks if you do not feel up to it. I would not think they will go ahead if you still have low white blood cells. Have you had a blood test this week to see if all is in order with your blood etc.?
I shall be thinking of you.
Love.
Sylvia xxxx
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Hello HelenLouise,
I was just popping in to see how you were bearing up with the capecitabine drug (Xeloda). How long will you be on this drug? Have you completely finished with radiotherapy?
I hope all is well. We have not heard from the Australian contingent for a while. I hope your weather is more normal now. The weather is very strange everywhere now.
Love.
Sylvia xxxx
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Hello, everyone; I am just dropping in to let you know that my Bone Scan was clear, so my oncologist is not likely to order another one. She felt that the hospital where I had it done has been exaggerating the "possible" metastases bit. I also got the results of my Vit. D test this a.m., and they are good, so was told not to increase my intake. It has been hard to deal with not consuming anything with calcium in it, and that is a long list, but I will do anything to get the blood calcium levels down. One thing I realized yesterday is that I finally am back to the strength level I was at in the spring of 2017. I can go up and down stairs without having to stop and rest, and no longer ask my husband to carry stuff for me, unless it is really heavy. Yesterday he commented on me taking five water bottles (3 cups each) up at one time.
In case I don't make it back on before Xmas, just want to wish everyone Happy Holidays and a Great New Year. We have a lot of coming and going here for most of this month.
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Hello Sylvia,
That's very good advice about the need to restore a balance of healthy bacteria. I don't like taking antibiotics and haven't taken them for many years. It was Hobson's choice this time.
Nowdays I find that many GPs ( I usually go to female GPs) are willing to accept the views of informed patients. However, surgeons are tricky to say the least and I've found myself closed down more than once in the last few months. Is this because surgery is still a male dominated profession, I wonder? Surgeons do still hold the balance of power in hospitals, why?
I'm having my PICC line fitted tomorrow at 9.00. As soon as that's in I shall call in at the chemotherapy unit where a nurse will take my bloods. If the white cell count is still low then I'll be given a break for a week. If I still feel unwell by Thursday, regardless of cell count, my oncology nurse will let me decide for myself. I have to go to the unit on Thursday in any case, as my PICC dressing will need changing. I'll see how I feel on the day. I did want to have the FEC part out of the way this week, if at all possible.
I too have read about the relationship between parathyroid problems and breast cancer. Do you think that thyroid problems, like breast cancer are becoming much more common? I do seem to have heard so much more about them during the last ten years. Statistics have been poorly managed in the NHS for so many years.
I met an ex breast cancer patient last Friday. She was diagnosed 20 years ago. When I asked her about the original diagnosis, she had no idea. She had a mastectomy, took Tamoxifen for 5 years and has been completely well ever since. I could hardly believe that she had asked absolutely no questions and really had no understanding of Tamoxifen, why it was given, side effect and so on. To undergo mastectomy without asking why, even 20 years ago is taking trust to a ridiculous extreme. I hope that far fewer men and women view their surgeons with such unquestioning awe these days.
The small pleural effusion is depressing and I have to hope that it's just an infection. Like you, I'm deeply concerned about X-rays. I don't believe they're safe and in the past they've been greatly overused. However, I may well have little choice.
Keep warm in this cold wet weather.
Love,
Gill X
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Hi Nancy,
So pleased that your bone scan was clear and that you're becoming much stronger. All in time for Christmas!
Have a very healthy and happy New Year.
Gill X
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Hello everyone,
I thought I would post a few photographs of the colourful display shrubs that we still have in bloom in the grounds of our apartment complex. I was very surprised to see a fucshia shrub still in full bloom this late in the year, but it did struggle in the hot summer. The mauve type blooms are from a hebe shrub and the yellow ones from a mahonia. These two are evergreen shrubs so we shall always have green leaves in all seasons.
The other photograph is of an unusual sunrise here in Exmouth this week.
Best wishes.
Sylvia xxxx
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Hello Gill and 53Nancy,
Thank you for your posts and I shall be answering more later on. I just wanted to comment on what Nancy said about having high blood calcium levels. I think we all know that high blood calcium can be a sign of metastases and a bone nuclide scan will show whether all is clear or not. However, it is very important to remember that high levels of calcium, or even slightly elevated levels, can be a sign of hyperparathyroidism (an over active parathyroid gland). There are four of these very small glands sitting on the thyroid gland. You need to get a blood test to find out the level of parathyroid hormone (PTH) in the blood and if it is high or even just above normal, you need to get this checked out by an endocrinologist. The endocrinologist will probably order a scan to see what is going on with these four glands. This is called a sestimibi scan and will assess what is happening. usually the problem is a non-malignant adenoma sitting on one or more of the glands and is causing abnormal levels of parathyroid hormone and calcium. Surgery is needed to remove the faulty gland and then parathyroid hormone and calcium quickly reverts to normal.
I know this because I have been through it. When I was first diagnosed it was discovered that I had high calcium levels and I did have a bone nuclide scan which showed everything was clear. My oncologist and breast cancer consultant/endocrinologist looked at parathyroid problems and it was discovered that I had an over active parathyroid gland.
Surgery is needed and should not be delayed because this problem can cause other problems. It does cause osteoporosis because the calcium is going from the bones to the blood.
That is all for now. It would be nice to see more posts.
Best wishes.
Sylvia xxxx
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Hello Sylvia,
Interesting information about calcium in the blood, had this been found during my bloodwork, I would have jumped to the conclusion that my cancer had spread to the bones - I'm sure that many of us would. Hyperparathyroidism wouldn't have entered my head. However, it is to be hoped that referral to an Endocrinologist would be organised?
My PICC line was fitted this morning and a blood test taken straight away. This showed that my white cells are almost back to normal. As long as I feel up to it, my final FEC will go ahead tomorrow morning.
Surprised to see your fuchsia and hebe still flowering in December. The very hot Summer made for a gloriously colourful garden until late August. The roses (my area) were the best I've ever seen them and the heat rea!ly brought out their scent. We have our own water supply and were able to drench the garden twice a day. The lawns ( Michael's territory) were mostly left to cope as best they could and suffered throughout the draught. They're as green as ever now.
I have been wondering about Flora and her mother. It seems a long time since we last heard anything. Hope all is well.
Like you, I'm looking forward to more posts. I find other peoples' experiences so informative. It's also encouraging to hear about others reaching the end of treatment.
Take care,
Love,
Gill X
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Hello All (or all Brits, anyway)
Anyone come across the Patient Knows Best website? I got an email from Imperial Hospitals (Charing Cross & Hammersmith), along with a pass-code texted to my mobile so I could set up an account on this. It lists all my appointments this year so is a useful reference and I am allowing this basic information to be accessed by medical professionals.
Gill, good luck with tomorrow's chemo and with the PICC line.
I've been wondering about Flora's mother too.
There is still some blossom on my honeysuckle outside the French windows.
Susie
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Hi Susie,
Just visited the website, but never heard of it before. I wonder if the Norfolk and Norwich will be in touch with me when my treatment is over? I haven't kept any electronic details of my treatment since diagnosis, but have a folder that contains the whole lot.
My honeysuckle was all leaf and no flowers this year. I do have a pink rosebud ready to open though. Also some snapdragons are hanging on.
Looking foreward to achieving my chemo halfway mark tomorrow. I've promised myself that I can then do some stuff for Christmas. I haven't even made a Christmas cake yet, usually it's wrapped up and in a tin by mid November, having a twice weekly feed of brandy - and so am I. Have to admit that my Christmas cards are always a bit last minute.
Gill X
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Hi Gill,
Will you be having your first taxane on the 27th? Or do you get a bit more of a break over Christmas?
Susie x
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Hello Gill,
Thank you for your latest post. The problem with hyperparathyroidism or hypoparathyroidism is that it is not included in general blood tests, but I think it should be there, along with the thyroid blood test for hyper- or hypo-thyroidism. Marias who used to post on the thread had breast cancer and then thyroid cancer. She went through a lot and I have no idea what is happening to her now. With hyperparathyroidism you can end up in a coma.
I was glad to read that you had your PICC line fitted this morning and that you have had a blood test. I was glad to know that your white blood cells are almost back to normal and I do hope you will be fine for your final FEC treatment tomorrow. Please let us know how you get on.
I think the gardens are in a state of confusion with the extremes of climate and the never ending changes. Here in Exmouth we have one day mild then one day cold and endless rain, not to mention wind.
It seems as though we are all wondering about what is happening with Flora and her mother. It is a long time since we heard from her and it could be that she is just too busy. I hope her mother is alright.
It is of great concern and somewhat frustrating when people just stop posting. I do wish they would politely let us know that they are moving on. We have not heard from Helen either who was also looking after her elderly mother. I do not think we got to know whether her mother decided on treatment or not. I have also been thinking of Sarah another Brit who was looking after her mother with breast cancer. I wonder whether we shall ever hear from any of them?
I do understand that it is good to have more posts so that we get to know other people's experiences as they go through cancer treatment. If we all just view, there will be no thread.
Good luck for tomorrow.
Love.
Sylvia xxxx
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Hello everyone,
I was just wondering whether any of you have read the latest edition of New Scientist? There is an interesting article entitled Why Supplements Don't Work – It's not just what you eat but how you eat it. Inside there is a cover story The truth about supplements. Has anyone else read this?
I also have the latest edition of What Doctors Don't Tell You and there is some interesting information about CBD in an article entitled CBD: more hope than dope - it's the extract from cannabis that has healing qualities across a range of diseases, from epilepsy to cancer. There is a mention of triple negative breast cancer and how it can stop the growth of this cancer. You might want to read this. I get the impression that CBD is big news everywhere. Has anyone read this magazine?
That is all for tonight. Did anyone watch Doctors behind closed doors on Channel 5 this evening? I found it quite shocking.
Best wishes.
Sylvia xxxx
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Hello everyone,
I am posting two more photographs of sunrise here in Exmouth. This was at 7:30 am this morning. The photographs do not really give the dramatic sunrise that it was. We are now back to the usual rain and gloom, not to mention the doom and gloom of all the news.
Are you all busy preparing for Christmas?
Do not forget that for many they will be going through treatment during this period and they do need your support.
Best wishes
Sylvia xxxx
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To the opticians this morning for my regular eye test. No sign of any ill effects from treatment. Treated myself to a new pair of glasses which turn into sunglasses in sunlight.
My pubic hair is growing back. Thought I'd share that!
Susie
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Hello Mary,
I have really missed you this week. I hope all is well and that you are just taking a break.
Love.
Sylvia xxxx
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Hi Susie,
Pleased your eyes are good, My Oncologist told me not to have my eyes tested until after chemotherapy, so I'm happily looking at frames online. I only need glasses for reading and close work so far.
As.for your other good news, well er, thanks, that's also something to look forward to!
Gill X
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Hello Sylvia,
I thought that I'd sent you a long reply, however, the whole thing has disappeared.
Quick recap.follows:
I'm particularly interested in CBD. There's some very strong evidence of the healing properties of medicinal cannabis. Trials are taking place, but years could go by before NICE approves it. I can remember a long discussion I had with a patient who believed his cancer had been held at bay for years by cannabis oil. In the end he could no longer obtain his supply. Produced illegally it's a very time consuming and risky process. Sadly, his cancer returned. I do think the NHS should move more quickly on this one.
Michael will be off to the library sometime soon, I'll ask him to have a look at the New Scientist article.
Hope the 'Doctors behind closed doors' documentary wasn't quite as bad as ' Undercover Nurse'. I watched this a few years ago. Shortfalls in staffing are one thing, but the nurses here were nothing less than cruel and where were the Doctors? Interesting that the undercover nurse was struck off asap. I'm going to see if I can watch channel 5 online.
I did have chemotherapy today after more blood tests just to be sure that my body was up to it. So, I'm now very pleased to be halfway through, but can't celebrate with the pleural effusion hanging over me.
Michael has taken a few uplifting photos for me since chemotherapy began, I'll post them very soon, but must send this before the Gremlins grab it again.
Love,
Gill X
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A Norfolk sunrise, my front garden
Fairy Ink Caps, on a willow stump, taken last year. These are apparently edible, didn't risk it.
A Church in central Norwich on the evening of Armistice Day. The bells rang out for a full 5 minutes at midnight across Norwich.
Pigeon caught in a rainbow over our front garden.
Love from Gill x
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Hi, Sylvia
I am here, and okay, it's just been another crazy week. The contractor who agreed to do repairs on my old farmhouse started this week and it rather threw me off. I had been dreading it and yet it had to be done, since some of the old walls that had been wet in the past were disintegrating. So it could be worse, it is only one room and a bathroom, and the walls are not gutted to the outside, but still is a very messy, filthy process to rip off the wall layers of 100+ years. The man arrived a day early, so the day I had picked to get everything out of cabinets, chests and off walls was the day he came, and I ran around like a crazy person getting it done, because he is a very fast mover and was starting immediately. I arrived yesterday to move a few more things and had to leave when finished because the dust was choking, ugh, I will have to find someone to help me clean when all finished, I fear. I did not anticipate the amount of dust, I only wish I had covered all the furniture, I picture people sitting on couches and little puffs of dust coming up for a while!
I have also been trying to finish Christmas prep, since I go to several places over the holidays gift-giving is common to all of them, especially to the small children, not always the adults. Also food, always a necessity. On top of it all, the church I go to is planning a Midnight Mass, so our little choir has been practicing with mostly standard Christmas hymns, but a couple of new ones that have been giving me fits. I am the only alto and my part on one of them is discordant in many places, it does not come naturally to me to sing this way, and I have to work at it. And just the fact that it is at Midnight will be a struggle, and will seem very unusual, I have not roused myself to go to a Midnight Mass for many, many years.
I have been trying to keep up with posts and have seen that Gill has had a PICC line put in, thank goodness, she has had another chemo treatment and is half finished. Susie sounds good, and Helenlouise checked in. As for the non-posting posters, it would be nice to know what has happened with Flora's mother and the others who have gone missing.
I think I have subscribed to WWDTY, I'll have to go back and check. I do like that publication. As for the CBD oil, I do have some but take it only sporadically. I was told to take it regularly to get the benefits but I don't always think about it. It is the kind without the THC, as that is still illegal in our state. Medical marijuana was on the ballot in November and was voted in, so it it will be interesting to see how that all plays out.
It is very cold here now, it is hard for me to believe that some of you still have plants with flowers on them.
To cap all this off, my knee has been giving me very sharp pain, so I have made an appointment for next week to have another injection of steroid. I always think the injection doesn't work until it wears off and then I realize it was working to the best of its' ability!
I will be back as soon as I can, love,
Mary
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Hi Gill
Your pictures are beautiful, so vivid. Are they taken with a phone or an actual camera? Pigeon in a rainbow, wow!
Congrats on being half-finished with treatment, and glad you have a PICC line installed. Installed doesn't sound right somehow??
Do you still have fluid in or around your lungs?
Talk later, love
Mary
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Hi Mary,
Not envying you your house repairs. Impressed that a workman turned up a day early though. You're so right about dust, gets everywhere whether you cover stuff up or not.
PICC line is such a relief, no more stabbing about searching for a vein. White cells were just up enough for me to have my last FEC treatment. The coice to go ahead was left entirelly to me. Would like to celebrate being halfway through, but I won't see my Oncologist until the 21st and then I'll probably have another chest X-ray. Hoping for the best.
Michael takes his camera everywhere, Norfolk's full of wildlife so there's plenty to see.
Hope your steroid injection works. What a rotten sense of timing your knee has. Workmen to cope with, Christmas and your special choral appearance at Midnight Mass. Priests and choirmasters can be very persuasive. You'll have to be quicker with the excuses next year. You're very fortunate to have a good singing voice, my teachers always asked me to mime so as not to put the other children off.
Good luck getting on top of the dust.
Keep warm,
Gill X
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Hello Mary,
I was so glad to hear from you. I read very carefully what you have been doing this past week in your old farmhouse and it seems like very hard work. Please make sure you do not overdo things. Be careful with all that dust. Once again, I am trying to picture your living set up. Do you live in a house there, but also have a furnished farmhouse on the same grounds? It must be a lot of hard work keeping it all up to par.
It sounds as though you have a very busy time during the Christmas period as well. I do hope all goes well.
We have not had many posts lately, which is disappointing so it should not take long to catch up. I do not know where everyone has gone. Gill does need all our support as her first half of her chemotherapy treatment, FEC, has not been without problems. She does keep herself well-informed and her posts are always interesting. As for Susie, she seems to be doing well and has a good sense of humour. I do hope that all those who have gone missing will pop in to let us know how life is treating them.
I am sure you will be pleased with the magazine What Doctors Don't Tell You. I recently bought the December edition and on the cover the title is Let there be light – Healing arthritis and muscle pain with lasers. The main topic in this months issue is all about the wonders of CBD and on page 20 there is an interesting article with the title CBD: more hope than dope – it is the extract from cannabis that has healing qualities across a range of diseases from epilepsy to cancer. On page 22 of this article I saw the following: "CBD triggers cell death in breast cancer cells and stops lung cancer from growing and spreading".
Within the article it has the following: "It even stops the growth of aggressive, life-threatening breast cancer and seems to be especially effective in cases of so-called "Triple negative breast cancer". It appears to interrupt the cells' signalling ability to prevent them from spreading.
"CBD spray is an effective pain reliever for patients with advanced and end stage cancer. In one test on 43 cancer patients, researchers from a hospice in Shropshire, UK, discovered that the spray reduced pain and helped the patients' insomnia and fatigue".
There is a lot more on these three pages about how CBD can help with different things and there is also a page advert showing containers of CBD with different strengths. The hemp seed oil goes from 3% to 40%. The price quoted is from £17.49, so it is not cheap.
Do you know much about this product? I have seen it in various shops in Exmouth lately. I do not know what to think.
I was very sorry to read that you are having trouble with your knee. I do hope the injection brings some relief.
I still seem to have too much to do here and keep hoping for more free time.
There is rather a sad atmosphere in our complex at the moment as two residents have very recently died. It certainly makes you think of your own mortality. Today the weather is gloomy and just more and more rain. Tonight we are going to get gales.
That is about all for now. Take care of yourself.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. I do agree that it could take years before NICE approves CBD. If it can be beneficial and ant-cancer, it sure beats the toxic drugs etc. that are being used at the moment. There seems to be a plentiful supply of CBD oil in Holland and Barratt here and my natural food store as well as the Grapetree.
I do find that the New Scientist magazine and WDDTY magazine are well worth reading.
I did find Doctors behind closed doors quite hard to take. For my taste it was not professional enough and the patients seemed ill-informed and lacking in self-respect, dare I say!
Thank you for the lovely photographs. I really enjoy looking at them.
That is about all for today.
Love.
Sylvia xxxx
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If you have a KIndle, one of today's KIndle Daily Deals (for 99p) is 'F*** You, Cancer' by Deborah James, which looks as if it might be worth a read.
Susie
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Morning Susie,
Just googled this and there's an excellent preview available.
So much of what Deborah James says rings true for me.The very persistent acquaintances who want to call in for a coffee, just to keep me company ahhhh.She's managed to stay frivolous enough to feel better putting lipstick on - me too.
Don't know about anyone else here, but I find the many people who insist on telling me how brave I am to be the most irritating. What's brave about having absolutely no choice?
Enjoy the rest of the weekend, lovely sunny day in South Norfolk.
Gill X
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