Calling all triple negative breast cancer patients in the UK
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Hello Peter,
I have at last been able to sit down to post. I can understand your concern at the time about what would happen to your son if his mother died before he left school. That was a good idea to read from the beginning to see how many people diagnosed three years earlier were still alive. You have so much common sense.
I was interested in what you had to say about Facebook and the fact that you feel that it makes you feel that you are part of the story and not just reading it. I think we all have different reactions to a diagnosis of breast cancer, or any cancer. I wanted to keep very quiet about it until I had had time to do a lot of thinking about it. I did not go through my breast cancer treatment on this forum but just went through it with Raymond, but decided from the beginning that I was going to be in control of it.
I can understand what you mean about the instantaneous of Facebook and how that can be of great help when you are feeling down.
I know that a cancer diagnosis is awful for anyone but I do feel great compassion when it is young women with young children to bring up who get diagnosed. It must be awful for the children because they will pick up quickly that something is not right. The story that you related of the nurse and her young daughter is heartbreaking.
It sounds as though you live in an interesting environment. Where we live, very close to the sea, we do have foxes, badgers and owls coming in the grounds, but most of all grey squirrels and different birds, especially a robin who likes to keep me company if I am doing some gardening. He is so tame.
I do hope all goes well with your flight to Aberdeen on Thursday to collect your motorhome. I do hope you will be safe. Have you been one of those who was shielding for such a long time? The husband of a friend of mine has been doing it and has found it very difficult. How did you end up with no immune system? Do you take anything to boost it?
I was very interested to have news of your son, Taylor, now all grown up at twenty! I think that a lot of young people are spending a great deal of time on their computers, although I am told that most of them now do everything on their smartphones. I see them often walking around in Exmouth completely hooked on their phones. I do wonder what this is doing to their eyesight. As you say, if it makes Taylor happy that is good.
It looks as though Taylor has an enquiring mind and has taught himself a lot of things. I am sure he will make his way in life.
I was very interested to know that you are still supplying chocolate fountains and that Taylor helps you with this business.
That is about all for now. I need to reply to Gill and then relax for a bit. The day has gone so quickly.
Very best wishes to you all.
Sylvia
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Hello Gill,
Thank you for your latest post. I am trying to catch up and to keep the thread meaningful. I try to read other posts on the TNBC forum and to help others. Sometimes I find things get very muddled and try to simplify things. I feel this is very important when it comes to chemotherapy. I feel that the abbreviations of the chemotherapy regimes can confuse the newly diagnosed because sometimes the brand name is used and sometimes the generic. I think they should always give the generic names.Sometimes the first letter of the generic name and brand name have the same letter. If I remember correctly, my oncologist always used the generic name. For example, she told me that she would start me on epirubicin and cyclophosphamide. She also told me that epirubicin was the same as or in the same group as doxorubicin, that it would make my urine red, the same as doxorubicin, but it was less harmful on the heart. These two drugs were known as the Red Devil.
She always called it cyclophosphamide and not the brand name Cytoxan.
I do wonder whether getting all that information on the final report is too complicated and unnecessary unless it is explained in simple terms.
I went through all my treatment, six months of chemotherapy, surgery (mastectomy) and three weeks of radiotherapy and at the end my oncologist and breast cancer surgeon called me in for an appointment and announced with a smile that the good news was that I had had a complete pathological response. Of course, before this announcement, after treatment, I had had a CT scan. A bone nuclide scan and an ECG.
Because of this everything was very clear in my head.
I do sincerely hope that you will get to see a consultant soon and get to know what is causing the pain. The good news today is that GPs are being told that they must have face to face consultations with their patients. I think this is essential and I would not participate in anything else and always insist on seeing the doctor with whom I registered. It is bad enough being a number at the hospital, which is what I consider Raymond to be in the present situation.
I do feel for cancer patients in the present situation and I urge them to read up as much as they can for themselves about what a cancer journey is like. You need to face your treatment with confidence and reassurance and as a fully informed patient.
I do agree that cancer patients are suffering too much because of all the time being spent on Covid-19. It will result in more deaths.
When I can I shall post about an article I cut out from one of the magazines entitled What Doctors Don't Tell You. A friend dropped some copies by for me as my local natural food shop does not stock then any more. The article is entitled There is another theory as to how epidemics happen – and it is not person to person. Is it catching? By Brian Hubbard. It says Could viruses be laten in us, the soil or our food, perhaps – until they are sparked into to life by some outside change that makes conditions ideal for their sudden emergence?
I shall write more later.
I do hope you had a good beginning to the week.
Take care.
Love.
Sylvia xxxx
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Hi Peter,
Thank you for the excellent advice, especially about the front suspension. I had planned to look at Evans in the city centre, but a test ride by the river would definitely be preferable. I'll probably be looking at second hand.
Memories of Wroxham came flooding back after your post. When we lived to the North of Norwich Wroxham and Salhouse Broad were our regular weekend haunts with the children. We sometimes had Sunday lunch in what, if I remember rightly, was a hut by the river. Once we moved to South Norfolk, Beccles and Southwold took over. Definitely time to have another look at Wroxham.
Enjoy your new motorhome. South of France next month sounds perfect - fingers crossed.
Gill
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Hi Sylvia,
I have Rheumatoid arthritis so I take methotrexate. It takes away my immune system as it is my own immune system attacking my joints. However like cancer I have read many different things about covid, how it spreads etc so I still go to the post office to post parcels at least 4 times a week and I do the shopping as I know they are safe.
Good and bad news. We went out to Hunstanton yesterday, had a lovely walk along the coast, cod and chips for tea. This did not agree with Liz's gall stones. Liz has been in very bad pain over night and filled in an NHS form online at about 4am this morning stating were the pain is etc. I received a phone call from Norwich hospital this morning telling me Liz can have her operation to remove the gall stones Friday 25th September which is amazingly quick.
We were planning on going to North Devon next week but that's now not going to happen. Liz has a drive in Covid test next Tuesday in Norwich 3 days before her operation.
I agree everyone is different and some people go through their cancer journey on their own or only with close friends. Liz's mum who died from breast cancer refused to go and see the doctor for the first 2 years and by the time she did go it was to late it had spread. This was a common story back in the 1980's
You only have to look at tv now, when I grew up nudity was rare on tv. You now have tv programmes similar to blind date were everyone is naked and they look very closely at their private parts commenting on them and they only put their cloths back on and go on a date at the end of the programme. The programme is called Naked Attraction.
We also have medical programmes concentrating on private parts and even a show were couples have sex in a room and them come out and comment on it afterwards.
I do think people are so much more open and will talk about things that were not talked about years ago because of these programmes so I do think on the whole they are good. I find it fascinating how things change between generations. None of my children were Christened. When my daughter thought she was a lesbian my mum cried for days over it. Yet I never had a problem with it. When we found out Taylor had cerebral palsy my mum openly said if his face was disfigured or he talked funny she would not be seen in public with him. When Taylor was only a baby we went to a country fair. Liz and my mum sat next to a young female teenager who had down syndrome. She was looking at Taylor. Liz spoke to the girl and allowed her to hold Taylor. My mum nearly fell off the bale of straw she was sitting on. She got up and walked off. The mother of the teenager said thank you very much. Even the mother could not believe Liz had allowed her daughter to hold a baby.
It makes you think what will happen in the future? Will all dating sites in the future have to have at least one picture of you completely naked or even all pictures?
I'm rambling now so will stop but I'm sure there are a lot less people like my mum now.
Peter
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Hello Sylvia,
Your plants are doing very well considering all the hot weather we've been having. No doubt you still have the job of watering them.
I spent yesterday evening watching the Brexit Amendment debate. I really think that MPs who disagreed with the Government breaking international law should have voted against it, rather than abstaining. If you didn't see Ed Miliband's statement, do go and watch it, it completely demolished Johnson and had MPs from all sides sitting on the edge of their seats.
I shall be interested in the article from 'What Doctors Don't Tell You'. When I was first diagnosed, my breast cancer support nurse handed me a huge pile of literature to wade through. There was some useful advice about surgery, reconstruction, psychological impact, claiming benefits if needed and so on. What was missing was a sensible discussion about the possible serious side effects of chemotherapy. The information was all very upbeat and I can quite see the reasoning behind that approach. For me however, the truth is very important. I knew that chemotherapy could be dangerous, but believed life threatening incidents were very unusual. I wish I'd been better prepared for what happened in my case. I was told that what happened to me was extremely rare, but I'm not sure how true that is.
You're right about patients being confused by the different names given to chemotherapy drugs and often drugs in general. I wasn't clear about the 'T' part of my chemotherapy and hadn't understood the difference between Paclitaxel - Taxol and Docetaxel - rebranded name of Taxotere. Both are very similar and related chemicals. Apparently Docetaxel is still considered the most effective in treating metaplastic breast cancer but with risks that oncologists should discuss with their patients. Treatment should be stopped if the patient has the reaction that I had. Neulasta is usually, but not invariably effective at building white blood cells.
I'll close here and hope the thread becomes a little more active as the week wears on.
with love to you and Raymond,
Gill xxx
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hello everyone,
All going well here in Australia as the spring weather brings warmth and makes me smile. We have about six weeks of idyllic weather and then it will start to get warmish and then hot! That’s ok as I prefer the heat over the cold. The garden is starting to bloom. Loved the photos of your garden Sylvia and to hear you have a robin to keep you company.
It is interesting to see the scientists are looking at monoclonal antibodies (MABs) as a treatment for COVID. The two targeted therapies I am on are MABs: Trastuzumab (Herceptin) and Pertuzumab (Perjeta). Speaking of generics and brands
. All going well with those! Side effects seem to have settled some and I am getting used to the idea of three weekly treatments ongoing. We have got the infusion down pat and it only takes two hours all up. Very glad to have the port. Have stopped taking premeds and don’t require any maxalon post infusion. The border is still closed near where I live and the state of Victoria seems to be getting the number of COVID case down. hopefully things will slowly find some sort of normality soon. I do wonder how bad the economy will be hit by businesses being closed for so long. Very thankful it has not impacted our family to any great degree.
Wishing each of you the best - Helen xx
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Hello Peter,
I was sorry to read about Liz and the bad pains overnight, after a nice time out. The good thing about it is that it has brought forward Liz's surgery for removal of the gallstones and the 25th is fast approaching. We shall be thinking of her.
It is good news that Liz will get her Covid test on Tuesday and that it is in Norwich.
All this will soon be behind you and you can then look forward to a trip to North Devon.
I was sorry to read about Liz's mum who died from breast cancer and would not go to see the doctor for two years, by which time it had spread and it was too late to save her. I also delayed for quite a few months as I have said many times and I have also said not to delay. I always say keep an eye on your body, do your breast checks, know what is not normal and get it checked. If you can have just surgery and perhaps some radiotherapy, it makes the cancer journey so much shorter. Everyone seems to agree that chemotherapy is the hardest part of the journey. While I was delaying I was still taking action and seeking advice from different quarters and reading up to be informed. I was taking various things, such as oral Iscador under the supervision of a cancer consultant. I started orthodox treatment when I felt informed enough and at ease with myself.
I have to end now to make a phone call but I shall do some more posting during the remainder of the week.
Take great care of yourself and Liz.
Sylvia
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Hello Gill, Peter and Helenlouise,
I have not forgotten you but I have been so busy that I shall have to answer your posts probably at the weekend.
This has been a difficult week and it is not over yet!
Best wishes to all three of you. Talk to you soon.
Sylvia
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Hello Peter,
I hope you managed to go to collect your motorhome today. I was not sure whether you would change your plans.
I do agree that everything is much more open today and that we talk a lot more openly, whereas, in the past, everything was hidden and secretive. Sometimes I think everything may have gone a little too far. There is no mystery left, however, as for people with disabilities of any kind it is all for the better that they are now part of normal life and are not kept hidden.
As for the future, I really have no idea where we are going, but I do hope that romanticism will not vanish.
That is about all for today. I am trying to work my way through a list of thing to do so that they do not drag on into the weekend.
Keep well, keep safe, keep happy.
Sylvia
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Hello Gill,
Thank you for your latest post. I do wonder where we are going on Brexit. I get the feeling we are going to go out on a No Deal. As for Ed Milliband, I did watch it and I do agree that he demolished Boris. I watched a replay of PMQs last night and think that Angela Rayner did a brilliant job as deputy leader and demolished Boris. He could not indulge in his usual sniping and he looked really put out. Ian Blackford also demolished Boris. In addition, Boris went before a committee and they demolished him. Boris is not up to the job as Prime Minister.
As for the article that I read in the magazine What Doctors Don't Tell You (WDDTY) it said "There is another possibility that does not get talked about. Suppose we have all got it wrong about the way viral epidemics start and spread. Suppose, instead, that viruses are latent – in us, the soil or our food, perhaps – until they are sparked into life by some outside change that makes conditions ideal for their sudden emergence."
Doctor Tom Jefferson, senior associate tutor at the Centre for Evidence-Based Medicine at Oxford University, has been the latest to voice the "Latent virus theory".
The article gets quite complicated but points out that epidemics, such as flu epidemics, have cases appearing simultaneously in different parts of the world and wondered how this happened if they spread from person to person.
"In 1918 the Spanish Flu infected more than 500 million around the world and despite quarantining and the wearing f face masks, it spread remorselessly even faster than man could travel. It also infected places that had had no outside contact, such as the isolated community of Western Samoa, where around 30% of the population died."
There are more details in this article and I shall try to add more in another post. In the meantime you might want to look up the author of the article, Bryan Hubbard and, also, Dr Edgar Hope-Simpson, a physician in the UK who also studied epidemiology, who believed in the latent virus theory.
The question is asked, why do flu epidemics peak in the winter and then just disappear as happened with the SARS outbreak of 2002.
As for chemotherapy, I do believe that a very candid discussion should be held with patients and that oncologists should not hide the truth. I remember at one of my check ups during chemotherapy, being told that fatalities did occur during chemotherapy. I was also told that it did not always work. In today's world, I do not think oncologists, consultants etc. can hide the truth about how dangerous chemotherapy is. As for docetaxel, I was told it was easier on the heart than paclitaxel and that epirubicin was less harmful on the heart than doxorubicin. I think that both taxanes probably have the same effect. They definitely cause neuropathy. As for doxorubicin and epirubicin, they belong to the same group of drugs and probably have the same effect.
I shall have to close now but I shall try to add more over the next few days. It seems to be taking me a long time to get through my list of things to do!
Thinking of you.
Love.
Sylvia xxxx
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Hello Helen,
At long last I can sit down to answer your post. Thank you for your kind words about the photographs. I do feel that from time to time it is good to have some photographs to look at to remind us how beautiful nature can be. If you have any photographs of Australia please post them. I can imagine how the spring weather makes you smile. I know I always look forward to spring and everything coming into bloom. It has been a strange year this year with the weather and a bit back to front. It has been rather warm for September and even hot and humid. I find it very tiring.
I am familiar with trastuzumab (Herceptin) and pertuzumab (Perjeta) because a friend of mine was on both of them because she was triple positive. She had the Herceptin after standard treatment and then had Perjeta at some point after it had spread. I am glad that all is going well for you on them. I am glad to know that the side effects have settled down and that you have got used to the three-weekly treatment ongoing. It is also good that you have got the infusion down pat and it does not take too long.
I was glad to read that the port is working well for you and that you are glad to have it.
It is very good that you have stopped taking the premedsand that you do not require maxalon post infusion. Remember, though, that the effects of this kind of treatment might build up as you go along.
I do wonder where Covid-19 is taking us. Everything seems to be getting worse and we seem to be having lock-downs all over the place. A doctor from Evidence-Based Medicine at Oxford seemed to say this evening that there is too much chopping and changing about what people should be doing. At the moment, in England, we are told we must stick to no more than six people together inside or out, but that seems a bit vague and then exceptions are added on. The doctor this evening seemed to say that Sweden had got it right and they have stuck to their decisions from the beginning seven months ago.
I think we are a long way from being back to a normal life.
That is all for this evening. Take care, keep in touch.
Love.
Sylvia xxxx
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Hello Helen,
Good to know all is going so well with your treatment. A port is definitely the way to go when you need regular infusions over time - much quicker and far less painful. I'm guessing that your veins are fairly useless with catheters by now. The nurse usually manages to find one for my six monthly Zometa, but has to go further up my wrist and arm now - ouch.
the weather in Norfolk is pleasantly warm and dry during the day, typical for September really. Most of the garden is settling down and getting ready for the colder months, still some colour from the late roses, marigolds and the new Winter pansies I've just planted. It's been a bumper year for apples and plums and for the wasps that feed on them until they're drunk - they're everywhere. Thank heavens for the excellent Spring and Summer here, much easier to deal with lockdown when you have the countryside and garden to enjoy.
Covid appears to have been impressively well controlled where you are. Australia and New Zealand should be congratulated on their excellent advanced planning. Apparently the UK may have to go into a 'circuit breaking' lockdown shortly as new infections are rising rapidly. The Health Secretary has introduced 'moonshot testing'. Nobody here knows what this means....... another day, another punchy new slogan. Our testing and tracing has been, and remains, a complete disaster.
Keep well Helen. happy gardening!
Gill xxx
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Hell Sylvia,
Thank you for your post. I'll try to get back to you over the weekend. Flu vaccination yesterday morning and then an afternoon meeting that went on until 7pm. Time, or lack of it is really a major issue once you've 'retired' it seems.
enjoy the weekend.
Love,
Gill xxx
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Hello again Sylvia,
I've just this minute had a letter from the hospital informing me that the recent mammogram of my right breast showed no suspicious features. My GP has been informed of the result. The problem is that I don't actually have my mammogram until September 25th. I'm strangely upset by this, how can I ever trust anything the hospital tells me? What if I'd had the mammogram and been sent a letter telling me that I was clear? This may well have been the case with the mammogram I had in November 2017, I just don't know.
I now have to email my GP. I've telephoned the hospital breast cancer department, but had to leave a message.
love,
Gill xxx
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Hello Gill,
Thank you for your post and I look forward to hearing from you during the weekend.
It seems that you and I need extra hours in the day and extra days in the week. It seems I am spending so much time writing never-ending lists that grow as quickly as I shorten them.
I do hope you will be able to read this 'latent virus' theory.
Here is another anomaly in addition to the 1918 Spanish flu.
"In 1857 the British warship, the Arachne, suffered a catastrophic outbreak of flu among its crew, with 114 of 149 men on board falling ill. The same flu had also broken out on land, and in Cuba where the ship was headed – and yet The Arachne had been at sea for months."
Another anomaly -
"A similar paradox happened 34 years later when the merchant ship Wellington set sail from London to New Zealand in December 1891. Towards the end of the voyage the following March, the captain started suffering serious flu symptoms, similar to those that had just appeared in his destination port – and yet he had not had any outside human contact for four months."
"If people are not passing viruses to each other, what causes epidemics? Danish physician Johannes Mygge tracked pandemics over the years, along with his own health, and saw a close correlation to sunspot activity. Atmospheric changes certainly seemed to trigger his excruciating migraines, but could they really trigger a flu pandemic?"
Reading all this and seeing that not only Mygge but also Hope-Simpson believed that pandemics are started by sudden spikes in solar radiation. It seems it was also thought that people low in vitamin D were more susceptible.
Going back to Dr Tom Jefferson, he suggests that the trigger could be more mundane and could be human faeces. "Faeces could be the carrier of latent viruses that are catapulted into terrifying life by some outside influence, but we shall only find out how epidemics happen if we put aside paradigms and instead do the groundwork."
This article ends with mention of John Snow, one of the first epidemiologists, who in 1854 went against the prevailing medical view that cholera was an airborne disease to prove it came from contaminated water.
It looks as though you need to do what John Snow did.
"You question people, and you start constructing hypotheses that fit the facts, not the other way around."
This means following true science, in other words.
I hope, Gill, you will find this theory interesting.
In the meantime, our government ends up messing around with Covid-19 and will simply not use common sense! Why would you open up the schools, universities and urging people to go back to work etc. and not test them all before this happens? Now we are going back where we started. That is alright, though. The Toffs will be out in force killing grouse like there is no tomorrow!
In the meantime, cancer patients will be suffering and all others with serious illnesses.
I could hardly bear to listen to Hancock this morning after the 8 am news on Radio 4. It was a complete waste of time!
I need to end now and have some lunch.
Love.
Sylvia xxxx
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hi there....I am new here......and my appointment for my zoledronic infusion is this week .....my first one.....and I am deciding whether to go ahead ....the side effects really scare me.......how do you find it?
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Hi everyone
Just letting u all know mammogram went well and breast surgeon reviewed and was happy! Have my routine colonoscopy Wednesday and hopefully when that's over I can breathe again. Been on the colonoscopy program for about 9 years now and wouldn't have bat an eyelid before but sends me into a cold sweat now!
Great to see u are getting there adagio. Take it easy and don't push yourself too hard! Gill I also had pain around the peroneal nerve (branch of the sciatic nerve) Which supplies movement and sensation to lower leg and foot. It was a legacy of taxol I'm afraid as it shortens the nerve endings and it takes a while for them to stretch! It's all associated with peripheral neuropathy. I used to get spasms as well but with lots of stretching it's start to settle. Maybe a good physio will help u. I still have massages once a week.
I've just seen my grandsons again after 8 months which is awesome but I've forgot how tough it is carrying a two year old around. Hard on the old back ha ha
Stay well everyone
Much love
Kath
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Hi Jackiey,
My first treatment was given (by mistake) whilst I had my second dose of Docetaxel. The next day I could barely lift my head, it felt a bit like a bad dose of flu. I've had 3 further infusions of Zoledronic acid since and only suffered headaches and then not seriously bad ones. No other side effects at all. The treatment doesn't take long and I'm very glad that I decided to to go ahead with it. We had someone on the thread over a year ago who had aching bones the night after having Zoledronic acid. It was fairly painful but settled the following day and when she had her next 6 monthly treatment she didn't mention any side effects at all.
Hope that helps.
Let us know what happens,
Gill
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Hi Kath,
Congratulations on your mammogram result. One test down, one to go, so good luck with the colonoscopy.
Thanks for the reassurance. Damage to nerve endings from chemotherapy sounds a very feasible explanation for my leg pain. In my mind I was already going for the spine mets option!
Yep, grandchildren do our backs no favours at all. How can these tiny people weigh so much?
Keep well.
Much love,
Gill xxx
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Hi Gill
Keep stretching! Mine was in the side and the back of my calf and started about a year after chemo and took about 18 months to settle. I still have peripheral neutral in my feet
Cheers
Kat
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Hello Sylvia,
Your last post was certainly food for thought. Being at sea for months at a time without any outside human contact ought to ensure a virus free environment after the first 2 or 3 weeks have passed without issues. I suppose It's possible that a virus could enter a sleeping or latent phase either surviving via a human host, a hard surface or possibly on dried uncooked food, emerging only when the conditions are favourable and when the virus has mutated and become stronger and more infectious. Present day epidemiologists must find it difficult to isolate an initial cause or a reason for such high rates of infection when people are continually flying off for holidays or hopping from country to country for work/meetings etc. It's entirely possible that environmental damage including intensive animal farming methods may have played a part. I'm not at all sure that China has told the whole truth. It seems entirely possible that there has been small outbreaks of Covid-19 prior to this, maybe over several years, which have been less infectious and therefore more easily contained. I just hope that a cause is discovered, if not then we may be looking at another pandemic before too long.
I don't think UK Government has a clue what's going on. Johnson has declared loud and often that he's just following the science. He's not, but he's certainly been successful in making senior scientists an object of derision in the 'daily right to know' press. This is useful as the scientists will now have the burden of blame placed firmly on their shoulders. Chris Whitty and Patrick Vallance should either start telling us what's really going on or just walk away from the whole mess. I think that if the PM mentions our world beating response or our world beating test trace system one more time I shall break something.
I managed to speak to my breast cancer support nurse yesterday and she was very apologetic about the all clear mammogram letter I received in error. She has opened an incident report. She will also write to my GP to explain that a mistake has occurred. These mistakes keep happening and this latest one has served to make a difficult week worse.
The weather is sunny and warm again but due to become cooler and more Autumnal next week.
Enjoy the rest of your weekend together. I do hope that your volunteer director duties are put on hold until Monday.
much love to you and Raymond,
Gill xxx
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Hello Jackiey,
I have just read your post and saw that it is your first post on the breast cancer forum and I was wondering what the reason is for your having an appointment to have your first zolendronic infusion this week. You have not given any details of a diagnosis and where you are, if diagnosed, in your treatment. Do you have breast cancer with triple negative tumour receptors and have you finished your treatment? Has your treatment caused you to have bone problems such as osteoporosis? Have you had metastases, perhaps to the bone, and are being advised to have a bisphosphonate such as zolendronic acid to prevent bone problems?
I can understand how difficult it is making decisions about whether to have a certain treatment or to take a certain medication. You have obviously read about the possible side effects and your oncologist or other consultant may have discussed them with you, but you are the only one who can make that decision.
On the thread patients can post only about their own personal experience and side effects. We are all individuals and react differently to treatment and medication. What affects others may not affect you and what may not have affected others may affect you.
I developed osteoporosis after my cancer treatment but refused any kind of bisphosphonate to treat it. That was my decision. I preferred to treat my osteoporosis by continuing to take vitamin D and getting calcium through my diet.
In my BMA drug book the common side effects of zolendronic acid are listed as bone pain, fever, fatigue, sickness and vomiting.
The rare ones are headache, dizziness, palpitations, rash, itching, facial swelling, tingling, muscle spasms, pain in the jaw.
It further says that for common side effects discuss with the doctor only if severe, and for all rare problems to discuss with the doctor except in the case of the last six mentioned, in which you should call the doctor straight away.
I do sympathise with the difficult decision you need to make. If you have any doubts and it is not something you need to decide urgently, if it were me I would take my time to think about it all and not be rushed or pushed into anything. You can always ask for a second opinion.
I do hope you will let us know how you get on.
Best wishes.
Sylvia
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Hello Kath,
It was nice to hear from you.
Thank you for letting us know that your mammogram went well and that your breast cancer surgeon is happy with everything.
I do hope that all will go well with your colonoscopy on Wednesday. You have certainly been on the programme for about nine years and I can understand that now you seem not so happy about having it. Is there any particular reason why you have been having them for so long?
I am hoping that adagio will get in touch as soon as she can, to let us know if she has date for her valve replacement surgery. She did not have a very good experience with her angiogram. I do hope she is not on a long waiting list.
As you know, Kath, I have peripheral neuropathy in the feet. My oncologist told me fifteen years ago, when I told her about numbness in the feet, that it was the direct result of treatment with a taxane drug. I had docetaxel (Taxotere) but it would be the same with paclitaxel (Taxol). I was also told that taxanes cause lymphoedema and I read it in that excellent book Let's talk lymphoedema. As for peripheral neuropathy, I was told by my oncologist and GP as well as two podiatrists that it was permanent damage to the nerves and that there was no cure. I do not have pain, but I have numbness and a feeling of stiffness underfoot. I keep the feet well moisturised and have my feet tested to see if there is any feeling. So far there has not been any.
It is beginning to feel very much like autumn here and the long nights are here. We are in a real mess with Covid-19 and I thought someone on the radio summed it up well today, when they said what else would we expect in a country that cannot cope with snow clearance and seems to create chaos out of everything! I think we shall probably go into another lock-down.
Keep well, keep safe and enjoy your grandchildren.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
With reference to the coronavirus, I think it has probably been around for longer than we are being told. It may have been passed off for flu because it was not causing this upper respiratory problem that is causing people to be hospitalised and put on ventilators. I think it is entirely possible that it has been spreading from animals, and that in the past and still today birds can be spreading it. We are destroying too much green land and animals and humans are living too close together. We are destroying the natural habitats of animals.
I do agree with you that the government here in the UK has not got a clue. Boris Johnson is all mouth and no substance. He sees everything as superficial and when he is caught out he puts on a smirk and turns everything into a joke.
I watched Dateline London this morning and was sickened to learn, when Polly Toynbee was talking, that she had contacted the headmaster at Eton College to learn that all the pupils there and all the teachers had been tested for Covid-19. It is sickening. I was talking to a friend a couple of days ago and he told me his children's class had been sent home from school because some of them had cold problems. He had tried to get tests for them and was told there were none, but you could get them if you paid £120 per person! What a country! We are so unfair and unequal that we might as well still be under the Tudors!
I was interested to know that you had managed to speak to your breast cancer support nurse. I do hope you will get a follow up to the incident report that she has opened. I do hope that the GP will amend the error at the surgery. We have found it difficult to get errors removed from GP records. We have complained about some wrong information on Raymond's record but we still do not have confirmation that it has been removed. We discovered this wrong information on his report from the hospitals this year and was told it came from the GP and they needed to remove it. We wrote to the GP but have had no confirmation that anything has been done. You do get so weary of chasing bureaucracy.
Today we have been catching up on various things, emails, phone calls etc. This afternoon we listened to a dramatisation on novels of Emile Zola. It was very interesting.
It is such a pity that Mary no longer posts regularly and that we have not heard from Marias or adagio, or Jags56. I wonder how they all are.
That is all for now.
Love.
Sylvia xxxx
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Hello everyone,
I am posting this as bisphosphonates came up today. This is from the A-Z Family Medical Encyclopedia.
These are drugs used in the prevention or treatment of osteoporosis. They are also used to slow bone metabolism (for example, in Paget's disease) and to reduce the high calcium levels in the blood associated with destruction of bone by secondary cancer growth.
Besides the zolendronic acid, given through infusion, there is also the bisphosphonate drug alendronic acid that is used in the treatment of osteoporosis and Paget's disease of the bone. The most common side effect of the drug is inflammation of the oesophagus, which causes heartburn or difficulty in swallowing. This has quite a lot of side effects, the rare ones being fracture of the femur, and osteonecrosis (destruction of the bone) of the jaw.
I have known some people who had problems with this drug.
Best wishes to all. Enjoy Sunday.
Sylvia xxxx
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thank you for the information......I was Diagnosed last December.....with IDC........my tumour was 2.2 cm.....grade 3.....margins were clear....no lympnoids involvement.......I had a lumpectomy.....stage 1........I felt pretty lucky......I was set to have 4rounds of chemo.....but with covid around.....I only had 2 rounds......my oncotype score was 25.....I started anastrozole......which I am tolerating...had 21 rounds of radiation......I thought I was all done.....but.....i went to my oncologist suggested to do zoledronic acid infusion 2x yearly.....
So......of course I have read about it.....and just wanted to see what others thought......I do take vitamin d.....my oncologistt said it would give me a 2 to 3 percent survival ....i am not sure the worrisome side effects are worth it....
I am in Ontario Canada
Thanks everyone.....it helps to be here
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hi Sylvia
In Australia we have a program for 50 plus whicH includes faecal occult bld tests every 5 years. It's a great program and routine colonoscopy for those with benign polyps which are common every 3 years. All free and although not the most comfortable a very good preventative program.
Numbers of Covid are dropping dramatically in Oz and our programs seems to be working well. I fear the northern hemisphere is just coming into the 2 Nd wave
Stay safe everyone practice social distancing and we can ride this through
Much love
Kath
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Hi Jackiey, and welcome to BCO and also thank you for sharing your breast cancer diagnostic history. Are you also "triple negative"? You are welcome on this thread, but just wanted to make clear it's for people who have a triple neg dx. We're all here to help in any way.
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Hi Sylvia,
Just a quick message. The flight up to Aberdeen on Thursday had 6 passengers on and I felt very safe in Norwich airport and on the plane. Everyone wearing a mask.
500 mile drive home in the motorhome finally arrived back just gone midnight.
Liz and I are off to Cromer for 1 maybe 2 nights in the motorhome this afternoon. making the most of probably the last 3 nice days before winter. Liz wants to try the motorhome out before she has her operation.
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Hello Jackiey,
Thank you for posting back your details. It does help us to understand. I did notice that you had not put in your tumour receptor status. These are given in three parts. Oestrogen, Progesterone, and Her2. You will have been told whether these are positive or negative or a mixture. It is very common to be positive with oestrogen and progesterone and negative in HER2. You will have been given these so please post them in.
The very fact that you have been started on anastrozole shows me that you were hormonal positive for oestrogen.
It looks as though you got through your cancer treatment, surgery, chemotherapy and radiotherapy very well, so that is good news. The fact that you are tolerating anastrozole very well is also good news.
The zolendronic acid is used after standard treatment to protect the bones etc. Gill has already said that she is taking it.
It is good that you are taking vitamin D.
I can understand that you have some concerns about the side effects of zolendronic acid and we all know these decisions are difficult but it is something you will have to weigh up for yourself with the information that you have. I think these infusions are becoming quite standard here after treatment, whether patients are hormonal or non-hormonal with their tumour status.
I was very interested to know that you are in Ontario, Canada. My husband and I lived in Canada for 17 years, 3 years in Montreal, Quebec, 10 years in Ottawa, Ontario, and 4 in London, Ontario, so we are familiar with the health service in Canada, which we always found excellent at the time, and of course it is similar to the UK health service and very different to the American one.
You are quite welcome to stay on our thread.
Wishing you all the very best and look forward to hearing from you.
Best wishes.
Sylvia
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