Calling all triple negative breast cancer patients in the UK
Comments
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Hi Kat,
Yes, thank goodness for the vaccinations! You and your team have saved many lives and saved a great deal of distress. It's particularly frightening when you can't get sufficient air into your lungs, I still have a milder version of breathlessness. Just have to hope it's temporary. Like you, I was gifted my Covid by the husband after his trip to London. No masks on public transport and wearing his mask obviously didn't help much.
Keeping everything crossed for good weather so that you can enjoy your holiday to the full.
Love,
Gill xxx
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Hi Kat,
Just lost my previous post to you. This new site is nowhere near as good as the old one.
Yes, thank goodness for the vaccinations. You and your team must have saved countless lives and even more serious illnesses. Fighting to get air into the lungs is frightening enough even with the vaccination.
I'm keeping everything crossed for good weather for your holiday. Hope you enjoy every minute.
Love,
Gill xxx
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Hi Gill
Once a positive dish of Vovid is made it’s not recommended to re test for at least 12 weeks as the pcr doesn’t differentiate between live and dead cells and you can throw off a positive for quite a while.
If you complete the required isolation and are symptom free then you are not considered infective any more. U then have a 12 week span where it’s unlikely that u will be reinfected
Due to a strong short term immune response
Cheers
Kat
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Hi Kat,
Very useful information. Feels like we have our own personal expert on here, thanks.
Love,
Gill xxx
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Hello Gill,
I do agree that Boris Johnson must be made to resign. He is a compulsive liar. Even his school reports apparently had that. He has pushed himself to the front with this occupation of Ukraine to distract attention. I do think that the police are being too slow in issuing the remainder of the fines and that we are waiting too long for the Sue Gray report. I think we should have had all this information before the local elections on May 5th. If the Conservatives do well, then there is no hope. The Labour party is not up to par either. They are forever sitting on the fence. I have been watching one member of the front bench Wes Streeting, and he seems to have a lot more go in him, but on the whole this is a weak Labour Party and too Blairite for my taste. I think Ian Blackford is a great speaker.
Our taxes are being wasted on all the wrong things. I am totally against war and arms, especially as they are given priority over making sure our population has food. The war against poverty is the only one in which I believe. I do believe what Tony Benn said, which was if you have money for arms you have money for food.
On a lighter subject, I was fascinated by the gathering of the crows. Yesterday I watched some kind of blackbird frighten away a huge seagull in our grounds.
I was sorry to read that you are feeling breathless and exhausted and I hope it will go in time. I can understand your anxiety about the lump on the left side of your back. I would have thought something like this would give you at least a priority appointment with a GP. Are there any clinics that examine and remove lumps in your neck of the woods that are within the NHS?
There is always something to make us worry and feel distressed.
It is dull here and we now urgently need rain. The weather man said this morning that this is a record dry April and no rain expected until the end of it.
That is about all for now. Take care.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
I see that you have gone AWOL! I do hope everything is alright with you. The world is so depressing that sometimes you have to switch off all the news.
Please get in touch. I think you have a trip to Australia planned but I do not think it was at this time of the year.
Sending you love and best wishes.
Sylvia xxxx
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Hello Sylvia,
There won't be much point in Boris Johnson being forced out unless whoever takes over is prepared to replace every single member of the Cabinet. Basic services like health, policing and education are completely broken and the Tories have no intention of doing anything other than running them further into the ground. We need a General Election and a complete reset. We're paying taxes for health services that are increasingly unavailable in many parts of England. Emergencies are no longer guaranteed access to A&E. Looking back at the last two and a half years, it appears that the Prime Minister deliberately set out to destroy the entire infrastructure of the UK. It seems that we have nothing of any value left.
I saw my GP about the lump in my back just over a year ago. She diagnosed a cyst, but wrote to my breast surgeon just to confirm her diagnosis. The hospital has denied ever receiving the letter, however, a doctor who I hadn't seen before did a telephone consultation, which was of no use at all. I think we are now expected to give up or pay up. I'm not blaming hospital staff, though I'm sure that many frustrated and frightened patients are making their feelings known. Doctors and nurses inevitably bear the brunt.
I'm still very tired and breathless, which is apparently quite common after Covid. My-son-in-law who is a very fit 36 year old experienced breathlessness for over two months post Covid. I read today that reinfection with Covid is very common and subsequent infections can be just as bad as the first. There are also examples of the longer term after effects being cumulative. I think we'd all hoped that natural immunity would be much longer lasting than that provided by the vaccines. Infections are falling, but that's to be expected now that the weather is warming up. We'll have to see what happens once Summer is over.
I do wonder how Helen Louise and Adagio are doing, both of them have been through so much and deserve to be enjoying life again. I expect Mary and Sue will call in soon. I wonder how Sue will find the second part of chemotherapy, most people find it more arduous. Perhaps the new website is putting people off. I still have to sign in every time and I've no idea how to register my favourite threads for quick access. The old site was much more user friendly and accessible - not everyone is confident with using technology, it shouldn't be an obstacle course.
Well, let's see what scandals the PM unleashes on us tomorrow. Feels like we're watching a very bad soap opera.
Take care.
Love,
Gill xxx
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Hello Gill,
I have just read your post and, of course, I agree with everything you said about Boris Johnson, his spineless cabinet and the basic services we are paying for but not getting. We need a general election but Boris Johnson will do all he can to avoid it. It needs Parliament to demand that he step down.
I cannot believe how they are trying to undermine Angela Rayner. Boris Johnson may have been to Oxford and trained at the Union, but he is one of the worst speakers I have ever come across. He cannot speak without a script and is no use off the cuff.
Boris Johnson is now using the trouble in Ukraine to keep everything else at bay. I thinkhe is quite prepared to start World War 3 to get himself off the hook. He does not seem to care about the people of the UK.
It is hard to believe what you said about the lump in your back. Why are we paying out for no services? What will you do? I think a cyst can be aspirated. Sometimes they just disappear.
My younger brother in Essex really told his GP a few home truths yesterday and so did the other one in Devon, several times. I have also expressed my displeasure with the surgery that Raymond and I go to. We especially do not like the fact that there are pharmacists in-situ at surgeries seeming to tell GPs what to recommend to patients. The flavour of the month for some time seems to be to put everyone with supposed high blood pressure on a drug called amlodipine for angina and control of blood pressure and the numbers being used to say you need to be such drugs seems to change! Doctors need to know that it is the patient who decides what he/she will take and what he/she will have done to their bodies. I was talking to someone yesterday who showed me the terrible bruising on her wrist as the result of a cannula.
These after-effects of Covid seem to be nasty.
I keep hearing that reinfection with Covid is very common. I have been listening to Mark Steyn on GBNews at 8 pm Monday to Thursday. He has been doing a lot of analysing of the statistics on Covid infections and deaths. It looks as though people who have had two vaccines and the booster are coming off the worst. Those who have had just one vaccine are coming off the best and those with no vaccines even better! I have thought for sometime that the vaccines might be undermining our immune systems and undermining our health. You will have noticed that no one seems to be pushing the next booster and anyway they do not last very long. Boris Johnson is certainly not pushing vaccines. He is too busy playing the great hero in Ukraine. He should be looking after his own people.
Like you, I do wonder how HelenLouise and adagio are doing. As you say they have been through so much.
I do agree that the forum is not improving. It is very tiring to use.
That is all for now. Take great care of yourself.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia, Gill, Mary, Kath and all on the forum,
I am still alive - surviving - and wishing I had never had the heart surgery. I have had 2 strokes since and thankfully neither have left me with lasting deficits - but I am now on Warfarin because I have a clot and a growth on my mitral valve with increased pressure in the heart chambers. It is crazy and getting medical help here is very, very challenging. Of course the coVid drama has not helped at all !
I have not had any vaccine - never felt comfortable with them - and still do not want them. Thankfully all of the times I have been in the hospital, not one doctor has ever asked me if I am vaccinated - so at least that is the good part. I take the bare minimum of drugs which is warfarin and a very low dose of a beta blocker to keep my heart rate at a slow rate. I refuse all statins, and any other stuff they suggest. I have zero faith in our health services - although - I do know that they are necessary. I fortunately have a very old GP who still works and I am happy with him and he knows my thoughts and feelings about drugs. My cardiologist says my case is too complicated for her and she has referred me back to the heart surgeon and that is just fine with me.
I just read a couple of the recent posts and I can see that the health system in the UK also leaves a lot to be desired. These are very strange times we are living in.
Our winter has been very long and very cold - and I look forward to some warmth. I am blessed to be alive and I have been blessed with a new grandchild who is 3 months old and lives in Toronto and I have not met him yet - I would like to but our government does not allow travel within our country unless we have been vaccinated - and my daughter is not vaccinated either . So these are tough times for us.
Will try to get on the site again soon - but thought you might like to hear that I am alive - not doing great - but OK.
Wishing only the best for each of you.
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Hi Sylvia, Gill, Mary, Kath and all on the forum,
I am still alive - surviving - and wishing I had never had the heart surgery. I have had 2 strokes since and thankfully neither have left me with lasting deficits - but I am now on Warfarin because I have a clot and a growth on my mitral valve with increased pressure in the heart chambers. It is crazy and getting medical help here is very, very challenging. Of course the coVid drama has not helped at all !
I have not had any vaccine - never felt comfortable with them - and still do not want them. Thankfully all of the times I have been in the hospital, not one doctor has ever asked me if I am vaccinated - so at least that is the good part. I take the bare minimum of drugs which is warfarin and a very low dose of a beta blocker to keep my heart rate at a slow rate. I refuse all statins, and any other stuff they suggest. I have zero faith in our health services - although - I do know that they are necessary. I fortunately have a very old GP who still works and I am happy with him and he knows my thoughts and feelings about drugs. My cardiologist says my case is too complicated for her and she has referred me back to the heart surgeon and that is just fine with me.
I just read a couple of the recent posts and I can see that the health system in the UK also leaves a lot to be desired. These are very strange times we are living in.
Our winter has been very long and very cold - and I look forward to some warmth. I am blessed to be alive and I have been blessed with a new grandchild who is 3 months old and lives in Toronto and I have not met him yet - I would like to but our government does not allow travel within our country unless we have been vaccinated - and my daughter is not vaccinated either . So these are tough times for us.
Will try to get on the site again soon - but thought you might like to hear that I am alive - not doing great - but OK.
Wishing only the best for each of you.
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Hello Sylvia,
I'm very much afraid that Boris Johnson and Liz Truss will drag us into a war with Russia. Johnson will do anything to save his own skin, including starting World War three. Let's hope that someone's had the sense to hide the nuclear code from him.
The Angela Rayner story has really backfired on the Tories. What the Mail on Sunday article was in essence saying, was that our Prime Minister can't be trusted to get on with the job when there's an attractive woman about. In fact, the Tory front benches are terrified of Rayner's impressive debating skills. Working class woman takes apart Oxford Union trained Prime Minister on every single occasion. This is purely an attempt at distraction. Why is there so little debate on the NHS? I don't trust the silence - probably with good reason!
I don't blame your brothers for tackling the poor services being offered by their GPs. Our local surgery is now so short of staff that it's often forced to close midweek. Newly trained doctors are rejecting the GP option as too stressful and too poorly paid. GPs are being deliberately pushed to the limit by the Government. My daughter and former GPs in the village have given me a fair idea of how bad things have become. My local GP surgery stopped draining breast cysts some years ago and I assume that all other cysts were now drained at the hospital. I had the impression that the hospital preferred it that way. I know that many GP practices here wanted grants to expand the building and take on more staff, in order to do small surgeries inhouse. It would have saved hospital time, patient waiting time and made the work of GPs more interesting. Our local surgery wanted to do this but permission has been turned down several times.
I too have noticed that numbers for high blood pressure keep changing. I take Candesartan to control my own bp, but Michael's been given an ACE inhibitor for hypertension. His bp is still too high according to the NHS website, but normal for his age according to the practice nurse!
I'm not sure if Michael and I will have the Covid booster when/if it's offered. Immunity from it wears off very quickly. I've noticed that more women seem to be suffering the longer term effects of Covid infection than men. Exhaustion and breathlessness being quite common. They've all been triple vaccinated.
Dull and very cool here today. I'm going to relight the wood burner as a jumper and woolly tights aren't helping much.
Look after yourself and Raymond.
Love,
Gill xxx
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Hello adagio,
It's a great relief to hear from you. I'm so sorry that after all the trauma of heart surgery there are so many problems. A growth on the mitral valve as well as a blood clot must give you and your family a lot to worry about. I remember very clearly how dubious you were about surgery, your training meant that you were only too aware that open heart surgery could go very wrong. I also remember how relieved we all were when you came through the ordeal and were very slowly regaining your strength. For this to happen after all you've been through is so hard. Your doubts were well founded. Surely the health service, albeit a failing health service like ours, owes you timely access to medical help when you need it? I do hope your appointment with your original heart surgeon comes through quickly. They need to come up with some solutions, they also need to consider why surgery has had this effect. Thank God that your two strokes haven't left you incapacitated. Let's hope the warfarin helps prevent any more strokes. I hope that the beta blockers are doing their job without making you too tired.
Fingers crossed that you'll be able to see your new grandson very soon. He needs to meet his Granny - very important relationships exist between grandchildren and their grandparents. Covid infections here are supposedly falling, but since free testing is no longer available, it's difficult to know exactly what the stats are. All restrictions in England were dropped a few weeks ago. Hope this will happen for you in the near future.
Take very good care of yourself adagio. You are in my thoughts and prayers.
Love,
Gill xxx
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Hello adagio,
I was so thrilled to see your post as I think of you often and I do miss you on the thread.
I was so sorry to read about all that you have been through and I can understand how you wish that you had never had the heart surgery. It is so unfair because I know that you followed a healthy diet, did exercise, avoided drugs and did everything possible to look after yourself. It is very strange that you have had two strokes since your surgery. Have you been given any explanation as to why you have had two strokes and why the heart surgery has had such a negative effect on you? I would certainly want some explanation.
I was sorry to read that you have a clot and are now on warfarin.
Do you know what the growth is that is on your mitral valve along with the clot? Are these two things causing increased pressure on the heart chambers? How are you coping with warfarin? As far as I know from friends and acquaintances with heart problems, they have been and are being taken off warfarin and given apixaban, an anti-coagulant to thin the blood and control atrial fibrillation, irregular heart beat. It has to be taken in the morning, one tablet 5mg and then another one twelve hours later. With this newer drug you do not have to keep going for blood tests.
It looks as though the Canadian health system and the UK NHS are completely ruined. We are paying taxes for nothing.
It is true that Covid has not helped, but it is being blamed for everything. We are now being told that we should never have had all these lock-downs etc. and that we should have coped the herd way. Masks are getting a very bad report and the statistics that I followed show that the more vaccinations you have the worse it is! I regret having the first two vaccines and the booster. I had them against my better judgement and am certainly not having any more. I understand why you have not had any vaccines, so at least you will not have all the side effects that are slowly being revealed.
I was glad to read that you are just taking two medications. Raymond is doing the same, a low dose soluble aspirin and low dose beta-blocker, 1.25mg.
I am going to take a break to make sure this gets posted and will then continue in response to your post.
Love and best wishes.
Sylvia xxxx
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Hello adagio,
Just to let you know that I have not forgotten you. I have just run out of time today. It has been one of those days!
I will write again tomorrow.
Look after yourself.
Love.
Sylvia xxxx
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Hello adagio,
I am doing the rest of my post to you this morning and I am hoping that I shall not be disturbed.
Yesterday I ended where I was talking about medication. I had mentioned the drug that now seems to be replacing warfarin. You mentioned the low dose beta blocker. Raymond is taking one called bisoprolol and is on the lowest dose of 1.25mg, a cardio-selective beta-blocker. Like you, he has refused all statins. I am taking no medication.
I was glad to read that you have a very old GP who still works and that you have a good relationship with him.
I was glad to read, too, that you are fine with your heart surgeon but wonder why your cardiologist says your case is too complicated. I just hope all goes well for you.
With Raymond the main problem from his triple bypass surgery does not seem to be with the heart at all. It is with the legs. The one where a long incision was made from ankle to below the knee to remove the saphenous vein remains very heavy and this seems to affect the good leg in which he now gets claudication (cramp) when walking especially anything uphill. He has been told to rest for a minute and then continue walking. He has not had any medical care or visits since his surgery on February 14th 2020, except for a quick home visit just two weeks after coming home from hospital in London, to sort out his medication. He has stopped taking all of it except for the two I mentioned. I think the surgery has slowed him down and he needs a lot of rest and sleep. I do not know what would have happened without the surgery. I do know that it is said that anaesthetics used in surgery strongly affects elderly people.
We are certainly living in strange times and England is certainly not the same country that we grew up in. I think we need a complete overhaul.
I think we are all looking forward to some warmer weather. I do remember those very cold winters in Ottawa, Montreal and London, Ontario.
I do hope you get to meet your new grandson soon. It is unbelievable what Justin Trudeau has been getting up to in Canada. It seems that the so called democracies are becoming more and more controlling and dictatorial. I do wonder what Pierre Trudeau, his father, would have made of his son's behaviour. I think Justin Trudeau has been using his father's name but has certainly not got his father's intellect. I did find politics interesting in Canada during the time we lived there, especially with Pierre Trudeau and Rene Levesque.
There have been battles here with the pro-vaccines against the anti-vaccines. The latest statistics seem to say that the unvaccinated are better off. A fourth vaccine is being pushed but I am certainly not going to have it. I think that the vaccines have been undermining the immune system. They were rushed out too quickly and without enough research.
It was really great to hear from you and to know that you are alive and living as normally as you can. I do hope you will keep in touch and let us know how things go. You know what we all say here is live one day at a time and keep looking forward.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post, which as usual was very interesting.
I need to take a break but hope to post later on today. What a lot of unbelievable sleaze is going on in Parliament! What is this country becoming?
Love and best wishes.
Sylvia xxxx
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Hello everyone!
First, I am so sorry to hear about the state of healthcare in the UK. I have known how lucky I am to have the healthcare that I do. You, unfortunately, confirm that in your posts. I'm so sorry. My availability to doctors and procedures has made this journal just a bit easier for me. I don't have to worry about that part of my treatment.
Yesterday, I did my first infusion of my second round of chemo. My next infusion will be in mid-May, though I will still go in to have my bloodwork checked. My pre-meds have significantly changed with this new round and I only had a mild reaction to them yesterday, so I refused the Adivan. I have tried to explain that I think it's the steroids, but they think they know better. They do, in fact, know better, but not necessarily about my body. I'll remain in that fight.
My doc, who was on vacation last week, returned this week. He reviewed the ultrasound results with my breast surgeon and they agreed that the tumor has shrunk by about half! That was great news to me. He also let me know that my bloodwork, including white blood cells counts, have been looking great since my booster.
In this second round, I will still receive Keytruda at each infusion. My new meds are Cytoxan and Doxorubicin. The Doxorubicin, which the nurses call "ruby" is interesting. It is ruby red and doesn't go through with the saline. It comes in a large syringe and the nurse has to sit and pump it into my port a little at a time over 15 minutes.
I have to say that so far today, and it's early here--a bit after 7--and I don't feel terrible. Everyone has warned me that I'll be tired and not very hungry or even desiring to eat. But the nurses have said to continue to hydrate--which I will. I also have Ensure on hand for the days when I don't eat very much. That has really seemed to help.
Thank you all so much for your advice and recommendations. I truly appreciate your responses!
Love, Sue
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OH my goodness!! What have they done to this site! I finally have returned to say hello and have been wasting time trying to get my profile in order. I have given up on that.
So HELLO to you all!Very glad to see albeit briefly that Sylvia, Gill, adagio and many others are still posting to this thread. I have not read the posts (since January) because I am time poor but hope to be able to catch up some moving forward.
My news: amazingly the broken ribs healed but the inflammation around my scar line has become worse and is spreading. And a new nerve pain comes spasmodically. The MO ordered all the scans and a biopsy that all came back clear. So I continued treatment. At my previous visit I asked if I could see a different dermatologist because I wasn’t happy to topically treat this inflamed plaque if no one could confirm what it was. Finally got a dermatologist to do a punch biopsy and it is breast cancer in the form of carcinoma encuirasse. Apparently a rare from of skin metastases. It is still HER2 positive so now I go onto Kadcyla (Trastuzumab and emtansine) so a targeted therapy (monoclonal antibody and a cyctoxic agent). So at least I have a chance that this next treatment may knock it back but I fear it won’t cure it. This cancer just won’t let up! At least I am not too sick at this point and I have had 5 years more than I expected.I am sorry this is all about me but I needed to blurt it out. I have become very wary of telling friends and having everyone hanging out for news.
The information provided by the MO reads the same as any chemo. Every side effect under the sun! I will look to see if there is a Kadcyla thread so I can get some idea of what to expect.
I am pleased you are still here and I sincerely hope you are doing well and staying healthy. Those of you still in treatment, I wish you luck!
Until my next post my best regards - Helen xx
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Hello Gill,
I agree with everything you said about Boris Johnson. I think Angela Rayner is a very good speaker. She has nothing to hide and says it as it is. Boris Johnson is a terrible speaker and useless without a script. When he gets up to speak he is more like a clown facing his audience and trying to stir them up. Many times he should have been sent out of parliament.
As for GPs, I think the main problem is lack of staff, despite the fact that Boris Johnson is always going on about how many doctors and nurses he has supposedly created! The Conservatives have never supported the NHS. They go on about being the party of low tax, but they never point out that, if you want services, then you have to pay tax to fund them.
I was interested in what you said about blood pressure medication. I have looked into this a lot because Raymond was put on blood pressure medication when he was in the RD&E. This bothered me because he has never suffered from high blood pressure. I read straight-away what he was being given. He was put on ramipril which belongs to the group of drugs known as ACE inhibitors and they are notorious for causing a persistent dry cough. Raymond developed a cough very quickly and said he did not want them any more and kept telling the nurses he did not have high blood pressure. They took him off and then promptly put him on losartan, to lower blood pressure. This drug belongs to the group of vasodilator drugs, called angiotensin II blockers. This is the same group as candesartan which you are taking. You mentioned that Michael is taking an ACE inhibitor so I am wondering if he is taking ramipril.
Raymond and I are convinced that all the medication thrown at him in the RD&E caused his heart to slow down and then stop, and so he was given a pacemaker, which he does not think he really needs.
Another favourite drugs, it seems, is one called amlodipine used for angina and high blood pressure. Apparently it can make angina worse! It is also used with diabetes patients who are on insulin. My cousin in London is on amlodipine and ramipril, not to mention beta-blockers! I am determined to stay off all drugs and will not have any more vaccinations!
I was so glad to see that HelenLouise has posted but sorry to read that she is having more problems. I was told by my oncologist that if a rash appeared on the scar line of my mastectomy, that it could be the first sign of a recurrence and so to keep checking it carefully.
It is a sunny day so far and if it stays that way it means that Exmouth will once again be inundated with visitors. We desperately need some rain. April has been too dry.
Have you been taking in the news about children and hepatitis?
I have been looking for information about the problems with the Pfizer vaccine that was being covered up. A judge ordered it to be revealed. I do know that there is a problem with myocarditis, blood clots and shingles. Have you heard much news about any of this?
That is all for today. I have looked at my list of things to do and have seven. I put the thread at the top of the list, so I had better get on with it and then continue on.
Wishing you and Michael a restful and enjoyable Bank Holiday weekend.
Keep safe and take care.
Love.
Sylvia xxxx
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Hello Sue,
It was nice to hear from you and that you have got through the first infusion of your second round of chemotherapy. I was glad to read that you are standing your ground. Please keep it up.
It was good news to read that your tumour has shrunk. It is good news that all your blood work is in order.
I was glad to read that you were not feeling too bad after the chemotherapy infusion. Most people say that sometimes side effects increase as the treatment progresses. The most important thing immediately after the infusion is to keep well hydrated. Make sure you get all the rest you need and try to eat even if it is small and often.
Your new chemotherapy medication of cyclophosphamide (Cytoxan) and doxorubicin (Adriamycin) is very common and has been used for a very long time. I had cyclophosphamide and epirubicin (Ellence). Doxorubicin and epirubicin belong to the same group. They called these two the Red Devil! We are told they affect the heart. I had ECGs before and after chemotherapy treatment.
I was interested in what you said about the way they are treating you with the doxorubicin and that it comes in a large syringe and the nurse has to sit and pump it into your port a little at a time over fifteen minutes. That was something new to me. My epirubicin went into a cannula with everything else and was fed in by a pump with the other drugs over about an hour. There was no nurse doing anything except setting up the pump and leaving until the session finished.
That is all for today. You will notice that Kath and HelenLouise from Australia are now catching up on the thread.
Keep looking forward.
Love and best wishes.
Sylvia xxxx
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Hello Sue,
Good to hear that the second part of your chemotherapy hasn't caused you many problems. Keep up with the Ensure as it helps with protein levels. I didn't drink nearly as much as I should have, as even water tasted bad. Hydration is essential, so find a fruit flavour that improves the taste for you. l found that very dilute lime cordial worked for me.
I was interested to read that the meds you're now being given are Cytoxan and Doxorubicin. I was given Cytoxan and Epirubicin for my first three cycles, which seems to be the norm in the UK. Doxorubicin and Epirubicin are comparable and are still considered the most effective meds for the treatment of breast cancer. Epirubicin is sometimes called 'the red devil', 'red' for obvious reasons and 'devil' because it can cause vomiting within hours of the infusion - as it did for me. If this happens, a very strong antiemetic capsule can be given an hour before your treatment.
You must be very relieved that the tumour is now so much reduced in size. Chemotherapy is extremely effective in the treatment of triple negative breast cancer. That light at the end of the tunnel is growing brighter!
Keep up the good work.
Love,
Gill xxx
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Hello HelenLouise,
It is nice to have you back on the thread.
The forum has not been working properly for some time now, but apparently the 'experts' are trying to do something about it. I am not sure what can be done. Someone took it into their head that the format needed changing, but I do not know why because everything was fine. It is now very bland, very, very slow, and involves too much clicking. Some posters have lost their details under their posts and I have had my head cut off on my photograph! I have asked for this to be sorted but nothing happens. If you go to Active Topics, you will find that the Moderators have started a thread to post about glitches etc. but I do not know if it gets any results.
I do hope you will manage to catch up on the posts, but I do understand how busy you are and what you are going through with treatment.
I was so sorry to read that the inflammation around your scar line has become worse and is spreading. It is strange that all the scans and biopsies came back clear because problems around scar lines should have sounded alarm bells. My oncologist told me that any kind of rash etc. on the scar line was a sign of problems and spread.
In your post you say that this inflammation, after a punch biopsy, is breast cancer in the form of carcinoma encuirasse. I am not at all familiar with this term. I was interested to learn that this is a rare form of skin metastases.
You said that it is still HER2+. Can you tell me when your HER2- changed to HER2+? Looking at all your detailed information I cannot see when this happened.
I am so glad to know that this can be treated. I do hope that you will cope well with the trastuzumab-emtansine (Kadcyla). Will you have to take this long term? As you say, it is a monoclonal antibody drug and a cytotoxic agent.
You have been through so much and we shall all be thinking of you as you go through this treatment.
I do hope that you will be able to avoid some of the side effects. Perhaps someone will post here about this rare form of breast cancer metastasised to the skin.
Sending you my very best wishes and just keep looking forward.
Lots of love.
Sylvia xxxx
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Hello helenlouise
It's so good to hear from you. Being time poor is probably no bad thing when you enjoy your work as much as you do. I hope hospital appointment don't take up too much of your time.
You've always taken a 'glass half full' approach to the many knock-backs cancer has sent your way and it looks as though you'll do the same with the rare skin metastasis you now have to deal with. I can't understand why you weren't offered a punch biopsy earlier, when it was apparent that tropical treatments weren't working. Now you know for certain what you're up against and I think you were probably relieved. I know everyone here will be hoping that Kadcyla (which I've never heard of) works as it should, holds back the cancer for a few more years and deals with the nerve pain. It makes me angry to think about how tenacious your breast cancer has been, but very happy to know that you've given it much more than it could ever have bargained for when it first took up residence. I think your story will inspire anyone who has ever thought of giving up.
I completely understand why you're wary about telling friends. Keeping everyone fully informed at every turn is exhausting and does nothing for your mental health. I'm very glad that you've confided in your friends here though. The support is always here, whenever you feel like dropping in.
Wishing you the very best of luck.
With love,
Gill xxx
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thank you Sylvia & Gill. Sorry to read sue is also in treatment. Good luck sue!
I will try to pop and read some more.
Today I can’t find my favorites! Had to trawl through the active topic to find you.
My cancer flipped to Her 2 positive back in 2020 which enable me to have the herceptin and perjeta up until very recently. If my memory serves me right I had redness in the area before I commenced on H&P. Which I started in combo with paclitaxel. I did disappear but come back again. Yes punch biopsy was need way before I ended up getting one. No sure my MO has seen this type of progression before. Anyway we will just have to see what happens next. Ps. I think my Her 2 is quite borderline. Negative on the standard test but positive on the SISH test. Maybe that’s why it keeps on keeping on.
We are heading into winter here which means your days should be getting brighter in the UK. Hopefully that will bring some joy xx
Off to see if I can find my favorites,,
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Sylvia, I had my 2nd stroke while on Apixaban the wonder drug - well - you can imagine in my mind it is not so wonderful. I spent a week in hospital getting off it and going on warfarin with a the help of a Heparin drip - it was a long slow process. I am now stable on Warfarin and so far have no problems. I have a follow up with the surgeon in June after an echocardiogram on June 29th - so we will see if there are any changes. I am also on Bisoprolol (like Raymond) and it seems to work quite well for me - it keeps my heart a little bit slower without impacting my blood pressure which tends to be quite low most of the time. The warfarin and Bisoprolol are my 2 prescription drugs and I am grateful for them. One conclusion that I have come to is that the doctors do a lot of guess work and hope for the best. My prayer is to stay out of the hospital - it is so soul destroying. Of course I will go for my check ups and monitor the state of my heart - it is such a worry. But it could be so much worse.
We all seem to have so much to deal with and I wish only the best to you and Raymond.
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Thank you Gill for your comforting words. It has not been an easy time for me - but I am doing OK - it could be a lot worse. I get good sleep and have a good appetite - I am able to do my daily walks and life has to slow down a bit - that's all. I wonder how one can go such a long time with no problems and then out of nowhere comes issues. I have personally found the heart issues to be harder to deal with than the breast cancer.
I hope that you and Michael can continue with good health care and if I recall your daughter is a doctor - so that must help considerably.
Things in England sound somewhat familiar and similar to what we are experiencing in Canada - we have a dire shortage of doctors in British Columbia and I just don't know what the future will hold for us retired people.
Wishing only the best for you and Michael.
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Hello HelenLouise,
Thank you for your latest post.
I do hope this forum will get sorted out soon. The procedure is too slow and too cumbersome. When I go to the forum, at the top of the page I click on the 'hamburger' sign at the top right, which is three horizontal lines. To the left of that sign is my decapitated avatar. Clicking on the hamburger should you bring you to a menu and I then click on My Favourites and then I find myself in our thread. I often look at Active Topics to see what is going on in the forum in general. There used to be two and a bit pages of Active Topics and each page was very long so there was not too much clicking. Now there are ten to twelve pages of Active Topics, but only about five subjects on a page, so there is a lot more clicking!
Do you do your posting in the thread? You can easily lose your post like this, so I go to Word and then copy and paste.
I hope this helps.
Thank you for filling in some of the details of your treatment. It looks as though the medical team should have been on the punch biopsy some time ago. I do hope all will go well now for you.
I do remember being told about 'borderline' when I was going through initial diagnosis. I was told I was oestrogen negative and just 5% progesterone which they counted as negative. The term triple negative was never mentioned and I discovered this term when reading something. It was only later that, in conversation with someone at the hospital, I was told that I was lucky not to be HER2+ and that it was better to be HER2-. I knew someone going through triple positive breast cancer but she just told me that she was taking Herceptin and other hormonal medications. The term triple positive breast cancer was not used. All that was a long time ago.
I was interested to read that your HER2 is quite borderline and was negative on the standard test but positive on the SISH test. What is the difference between these two tests? I have no idea what tests I had. I just remember blood tests and biopsies. Back in 2005 you had to push and ask to get information about your breast cancer. I did ask a lot of questions and was told that asking questions was unusual and most people just wanted to have the treatment.
I listened to the early morning news on BBC Radio 4 this morning and after it there was an interview with a cancer doctor. It was very interesting but it is quite obvious that in the UK we are way down the list with the treatment of all cancers in the UK. There are millions of people waiting for diagnosis and treatment. There is a shortage of all kinds of scans and equipment, not to mention a shortage of doctors, oncologists, radiotherapists and so on. It was said that 11,000 cancer patients are being treated a day. I cannot see that we are ever going to catch up and certainly not with the present government. Too much money is being wasted on useless wars and not enough on the health and welfare of people.
It is true that the days are getting lighter here in the UK, but there are too many overcast days. Today is a Bank Holiday, early Spring, but it is a rather sad cloudy day. However nature is slowly coming back to life and it is comforting to watch the shrubs and flowers blooming.
How do you rate your health service and how do you rate your government? Here in the UK I think there is too much moaning, but not enough action. The French are much more militant and do not hesitate to take their government to task. Having lived in France, I could see the difference between France and the UK.
That is about all for today. I do admire your great courage.
Take care and always look forward.
Love.
Sylvia xxxx
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Hello Sylvia,
I dread reading the news these days. We desperately need a General Election before any more damage is done. With all the scandals (lost count of those reported last week), how can we debate the real issues - those that affect the majority? The state of the NHS has fallen by the wayside, despite reports that while more patients with cancer are being referred for treatment, the backlog for treatment has never been so great and every day the lists grow longer. The shortage of dentists is constantly reported, yet never debated in the House. Since oral health has an impact on physical health, the impossibility of finding a dentist is a serious problem. The constant scandals are taking up far too much time.
I can't understand why Raymond was ever offered anything at all to control his blood pressure. Medicines should never be dished out routinely. I thought that doctors were trained to treat the whole body, rather than just the diagnosed condition. Side effects matter. Michael's Ace Inhibitors are Perindopril 2mg. His blood pressure is still higher than it should be and according to the very long leaflet that comes with the meds, he should have been offered a 4mg dose after a month of taking 2mgs. I'm afraid that Michael doesn't take his health seriously enough, despite having type 2 diabetes and AF.
I've been reading about the rise in hepatitis in young children. It seems that many of those affected have needed a liver transplant and will now now have to live with anti rejection drugs and regular hospital appointments. Despite rumours to the contrary, the children had not been given covid vaccinations as they were too young. We can only hope that scientists are able to give us more information and a solution very soon.
The very fact that Pfizer was so keen to keep the details of possible problems with the vaccine out of the public domain, is a cause for concern in itself. I haven't been able to locate further information as yet. As I've just had covid and the second booster only confers a short term benefit, I won't be having it.
Weather is cloudy and fairly cool today. Farmers and gardeners are desperate for rain, I can't remember when we last had a downpour.
Wishing you and Raymond a peaceful bank holiday Monday.
Love,
Gill xxx
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Hello adagio,
Thank you for your latest post. You have been through such a lot. Do you think the apixaban caused your second stroke or was it just ineffective? It puzzles me that everyone seems to be on the same medication. Were you ever on clopidogrel? It is described as an anti-platelet but seems to have the same effect as anticoagulants. I am so wary of all medication and it seems to be dished out in more and more quantities as there is an accumulation of giving out pills to counteract other pills and pills stopping the effect of others. It is so frightening. It is good that after all that you have been through you are taking just two pills on prescription as a regular thing.
It is good that the bisoprolol is keeping your heart beat in control without causing your blood pressure to go too low. I know that Raymond's blood pressure was going dangerously low when he first started the bisoprolol.
I think you are right in your conclusion that doctors do a lot of guesswork and hope for the best, but it is a dangerous game. I do not like the idea of pharmacists being on-site at doctors' surgeries and seeming to deal with patients' prescriptions and their drugs. This has happened at our surgery and I hear it from people in other surgeries. A few months ago Raymond had a letter from our surgery telling him to make an appointment with the on-site pharmacist from Bayer to review his medication. We did not like this and ignored it. We do not like the way surgeries are being run here, telephone appointments, videos and very difficult to get a face to face appointment or see the GP with whom we registered. This is not what patients want.
I can understand how you want to stay out of hospital. I have told Raymond that whatever happens with me, I am not going into hospital, so he is not to call an ambulance. As for Raymond, he is undecided about this.
An elderly aunt of mine has been taken into hospital about three times this year, with breathing difficulties. She tells me it is an absolute nightmare in the hospital. She seems to have been affected by both the vaccinations and having had Covid. The hospitals seem to be quite primitive now.
You are right in saying that we all seem to have so much to deal with and we somehow have to manage. I find life very stressful and I do not like the country of England in which I am now living. It has changed so much since my childhood. The creation of the NHS in 1948 was one of the best things that ever happened to this country, but it was meant for much simpler times and has not kept up with all the demands of an overpopulated and not very healthy country. I do not know if the NHS will survive.
When we went to live in Canada, in 1977, and went to Montreal, Quebec, our limited experience with the health service there was a very good one. It was the same when we went to Ontario. I think the health service worked at that time because it was a low population and a very well supplied health service. I think it has changed a lot since then.
That is about all for now. Keep in touch and keep doing all the good work to keep well that you have always done. I do hope Mary will be in touch soon, as I know she will be pleased to see you back on the thread.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Like you, I dread all the news that I am hearing. I have stopped reading the newspapers as most of them are not worth reading. The only one I would read would be The Guardian or The Observer.
You are quite right that we are not dealing with the urgent issues that affect ordinary people. We should be dealing with the cost of living crisis, the NHS, housing, education, energy and immigration.
Instead of these issues we are dealing with sleaze, and the general dumbing down of Parliament. I do think that the rest of the fines from double standards during lock-down from politicians should have been issued by now and the Sue Gray report made public. They should definitely have been made public before the local elections on May 5th. It all smacks of a cover-up.
I do not know what to make of Keir Starmer and Angela Rayner etc. Are they all tarred with the same brush?
As you say, we desperately need a General Election and I think both leaders need to go. The trouble is finding someone to replace them. Keir Starmer looks too old and out of place as he struts around with all the young women that seem to make up the front bench. I have noticed someone on the front bench, Wes Streeting, who seems a good speaker and has a lot more life and charisma than the rest of them. This is my own personal opinion.
As for Boris Johnson, I am fed up with his antics being summed up as having a piece of cake and drinks. He is not worthy of the position of Prime Minister, just cannot tell the truth and thinks the rules do not apply to him. Even his headmaster at Eton apparently said this of him. As for the Oxford Union training, it was obviously a waste of time.
I think that in the House of Commons the men and women should be in trouser suits and proper shirts and blouses. They should also ban mobile phones. The Honiton/Tiverton MP, pornography man, said he was looking up tractors, to which the farmers have coined the phrase "Farmageddon".
I have been quite angry about all those blood pressure pills that Raymond was given. I think that with the NHS the procedure is that one size fits all. If you have a heart problem you must have high blood pressure. Raymond was given 5mg of the beta blocker as soon as he was admitted to hospital, as well as 25mg of Losartan. I can just imagine what that did to his blood pressure, which had always been normal. His blood pressure is better than mine now. Mine was excellent, but noticed that it changed after my cancer treatment. It is normal now but not as good as it was and the GP has tried to push pills on me but I just say no.
You are quite right in thinking that doctors should be treating the whole body and being aware what mixing pills does and does not do.
I was interested to read about what Michael is taking. I do think that patients need to keep a close eye on what they are being given, what the dose is and what pills should not be taken with certain others. I do wonder whether this is happening.
My cousin in London has had diabetes for a very long time and does not take care of it. I think he is heading for some very serious problems. He has no memory of how ill he was in hospital and cannot retain information for very long. He also has AF but nothing registers with him. The other week on the phone I went through all his medication with him and explained why he was taking it, but he will not remember any of it. That is for the doctors!
I do not know where we are going with anything any more in this country.
It has been a rainy, dismal morning, but it is beginning to dry up now.
That is all for now. I shall leave you with this: A country that knows all about its citizens is a dictatorship. A country that knows all about its government is a democracy. You can see which one we are a long way from!
Take care.
Love.
Sylvia xxxx
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