Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Sylvia,
I do hope that you and Raymond are well and managing to lay your hands on the essentials needed to maintain your healthy diet. I'm told that there's still no flour in the shops, but I buy wholemeal and plain white from the miller to make soda bread. No yeast anywhere. I've stocked up on vitamins C and D from Holland and Barrett online. It took longer than usual to arrive, but that's to be expected. I really wish meds, vitamins, supplements etc could be packaged in cardboard drums rather than plastic. I despair of childproof lids too, they're very difficult for those with arthritis or neuropathy in their hands. According to Chris Woollams' newsletter, I probably should have ordered zinc too. He has some interesting information on the virus and potential treatment with chloroquine.
As far as I can tell, there's very little news regarding cancer, apart from delays to surgery. Given that surgery is the most effective treatment, this is very worrying. A friend has had her zoledronic acid infusion cancelled and I'm not sure if chemotherapy is continuing as normal. It seems to vary so much according to area and I keep reading different things. I hope that this doesn't deter women from seeking medical advice from their GP as a matter of urgency if they notice any changes to the breasts.
We have another sunny day here and could really do with some rain. I spoke too soon to Mary about the apparent absence of slugs in the garden. They were certainly out and about last night and managed to eat most of my cosmos seedlings. I'm not expecting much colour in the garden this Summer if garden centres remain closed.
I won't comment on the Government's handling of the coronavirus crisis. I think we're both of the same mind and the evidence is all around.
Keep well.
Love, Gill xxx
0 -
Hello Gill,
Thank you for your latest post. Raymond and I are managing as best we can. We did manage to get a slot on Tuesday (came up Sunday night) with Tesco and caught up with some of our groceries. We do have a small Co-Op at the end of our very long road (nearly a mile) and we do shop there regularly. It is a good walk for Raymond (a bit uphill) because we have to walk back, so we do not get a lot of shopping. The natural food store in the town, Mother Earth, has been very good and will deliver orders over £10 free of charge. They know us very well and are only too happy to help us. It is all very tiring and we do miss our regular visits to our own local Tesco store where we are very well known as 'healthy shoppers'! I always look for organic fruit and vegetables etc. and I also try to shop for UK produce and also shop ethically.
I understand what you mean about Holland and Barrett online. Because we cannot get into town where we have our local Holland and Barrett we are shopping online and it is very, very slow. Raymond complained about them taking the money and not supplying the goods.
I do know that zinc is very important but I think you have to be careful about taking supplements. I have read that it is one of those minerals that you need in small quantities. I think peas are a good source.
I also agree that some of these childproof lids are a pain as are some tins with pull back lids.
I have not had time to read the latest Chris Woollams newsletter but I know he always has something interesting to say. The drug chloroquine keeps getting mentioned lately as a possible treatment for the coronavirus.
It looks as though we are in for another three weeks of lock down and I am not looking forward to it. I think it will be harder to maintain as we go into late Spring and early summer.
I am concerned about the way the coronavirus is affecting cancer treatment in general. As you say, the most important part of the cancer journey is to get the surgery done with and the cancerous tumour removed. It is not really ethical to postpone this. It must be awful going through a diagnosis of breast cancer and being told what your journey will be amidst everything being taken over by the coronavirus. I think it is also very difficult to get appointments with your GP. The surgeries seem to be closed and everything is being done over the phone.
Raymond was due for an appointment with the GP on Tuesday but it was all done over the phone and was not very long. He has an appointment at the RD&E hospital on Wednesday April 29th to have his pacemaker checked (a previous appointment had to be cancelled) and his wounds looked at. We shall certainly not be setting foot in the RD&E hospital!
You are right about the government's handling of the coronavirus crisis. Boris is away in his country retreat and we have his cabinet taking charge to do the daily briefings and they are pathetic. I do not hear them saying "We shall get coronavirus done!" but they have the same parrot-like performance as they had for Brexit.
It has been a fairly cool day here in Exmouth and a strong wind blowing. On the whole the place is deserted. You may like to have a look at the deserted seafront and the main square by looking at the Exmouth webcams.
https://www.exmouthcam.co.uk/webcam/
https://www.exmouthcam.co.uk/strand/
The thread is very quiet and we have not had anyone new join our group for quite some time. There is so much information around that people may not need it as much. I do notice that there are or seem to be a lot of American women posting elsewhere or creating threads to say that they have just been diagnosed. I am heading towards 15 years since diagnosis on June 20th this year.
thinking of you and sending best wishes to you and Michael.
Love.
Sylvia xxxx
0 -
Hi everyone
First of all apologies for the length in time posting but as u would imagine we have been run off of our feet in the world of Public Health try to track and contact trace Covid. I’ve been managing the response for our vulnerable communities and we have already had a tricky case with over 36 contacts. Australia seems to be doing really well and our only big hiccup appears to be the Ruby Princess cruise which is responsible for quite a few clusters in Oz.
Been working 12 hour days and on call everyday which has been exhausting but I’ve learnt so much and it’s been good for me to focus on something different. Hope u all had a peaceful Easter and I’m
Currently enjoying my first day off in 2 months. Stay well everyone
Much love
Kath
0 -
hi kath. Your strength to work with this pandemic is incredible. I trust that you will continue to be very successful in containing this virus. Here in Cali, it is better to be well closed, I do not see anyone, my brother goes down the doors of medication and food to the goal and we are not going anywhere. I am alarmed since the cleaning lady on the floor where I work at the university, which is a student health service, is infected. She lives with 10 but I have made a list, with the names of each of them and the health insurance companies, and I have followed up and only two of the members have been tested. Today I called one of my friends who works in public health and I told her what happens with those tests and she says they should have been done but the days pass and nothing. They are people who live in depressed neighborhoods in the overcrowded city and it is very sad for them. but for public health I think that our country is going to explode with the infected and deaths in 3 weeks.
Abrazos
Marias
0 -
Hi Kath,
You must be absolutely exhausted and probably slept through your day off. Testing and contact tracing appears to be paying off, well done to you and to all Public Health staff in Oz. Meanwhile, in England and Wales we have testing centres so far apart that health care staff are having to drive many miles (sometimes hundreds of miles) to get tested. Contact tracing is being discussed in a vague sort of way. Very many Staff don't yet have personal protection equipment and hospital gowns are due to run out this weekend in several hospitals. The statistics here only show those who have died of covid-19 in hospitals. Those dying in residential care homes are now to be included - finally. Care home have been left without ppe and testing kits and staff in some parts of England have been told that no patients over 75 will be admitted to hospital for treatment. Many doctors and nurses have died, the rest carry on working but say they are living in fear.
Australia saw what was coming and planned. Hope you all continue to keep the situation under control.
Keep safe and well.
Good luck!
Gill xxx
0 -
Hi Marias,
Good to know that you're still well despite the chaos in your country. Like you, I feel for all those people who are forced to live in poor, overcrowded conditions. Once coronavirus really takes hold, the suffering will be unimaginable. It seems likely that many children will be left without families when this is over. Marias, I'm so sorry for the suffering in your country. These are very dark times for you. We can only hope that someone comes up with a cheap reliable vaccine very soon.
Thinking of you.
Love, Gill xxx
0 -
Hi, Sylvia
Today is a rainy day, we have had quite a string of pleasant days and I have felt duty-bound to work outside. I think it is also partly to wear myself out, and not have to think as much about what's going on here and everywhere. This has also made me a lackluster presence here, but you can be sure I never forget you. I have had many phone calls, friends inquiring as to my health, and I ask about theirs. I have one friend who is older than I, who has not stepped a foot outside her house in more than a month. I call her frequently because she is alone, I have dropped food off a few times.
It was very interesting to see the Exmouth seafront, it looks like it would be a pleasant place to sit on a sunny day.
Our State Governor came out yesterday for his daily briefing and announced he will try to begin opening up our State on May 4th, depending on what happens between now and then. This would not be with the whole State, because the large cities are still having more cases. I have heard so many things, even if things open up, I believe the people over 65 and the people with preexisting conditions will still have to stay home for the most part. The CDC Doc who came on TV with the President for his daily talk has a system of Phases for opening up the country bit by bit. A State or Area would have to have low numbers to even get to Phase 1, and then criteria would have to be met before going To Phase 2, and so on. We will see how all this goes.
It is true that influenza causes an amazingly high hospitalization and death rate every year, and it is never talked about. It is said that we are just accustomed to influenza, even though it is deadly to someone with compromised lungs, heart or other organs. We have a vaccine for flu, but it is not a sure thing. All I can figure out is that Covid19 is just so easily passed around, but so is flu. Someone explained it as the flu moves at a slower pace across the country, opposed to Covid19. The Hospitals were afraid of being overwhelmed, thus all the lockdowns.
This morning I decided to weigh myself, which I haven't done in a couple of months. I was quite surprised to see that I had lost 5 pounds. This immediately got me thinking of cancer, of course. I am a person who stays very stable on weight, within a pound or two on either side. So then I started thinking about my lifestyle over the past 5-6 weeks. I have not eaten outside home anywhere in that time, and I always did eat in a healthy way when eating at home. I have been very active with the weather being nice and I try to walk every day. I also do my physical therapy daily. I am trying to not worry, but I do have appointment with oncologist this month. I was thinking of postponing it but now I might put on a mask and keep the appointment with her.
That is just unbelievable that cancer surgeries are being put off in UK. Are your hospitals overwhelmed, that is what the hospitals and "experts" are trying to prevent. Here all elective surgeries have been cancelled, but surely they are still dealing with cancer.
i also am not confident about the "immunity" from the Covid19 if one has a case of it. There always seems a possiblity to get a virus more than once, it seems to me. I also think the much-talked-about Vaccine is a long way off, if it's even possible. The best bet seems to be a treatment of some kind, trials are going on all over the place here. Whichever one makes the grade, will probably be a newer, more expensive one too. Or am I just cynical??
I continue to send best wishes for Raymond's health, and a speedy recovery. I'm glad you can get your food deliveries in, and together we will all get through this.
Take care, and talk to you later
Love, Mary
0 -
hi ladies, what a strange and challenging time the world faces. As kath has stated we are doing comparably well in Australia. Thanks to our inherent isolation, timely action and the efforts of front line workerslike Kath. Thank you.
I received taxol this week and have followed it up with a dose of pegfilgrastim to hopefully get the bone marrow working a but better. Dr has indicated I may not be able to continue with chemo but still have the targeted therapy up my sleeve.
Feeling exhausted and not liking isolation one bit but no choices there.
Hang in everyone xxx
0 -
Hello Sylvia,
Thank you for the webcam links. I don't think I've ever seen a Devon beach so quiet. We didn't visit Exmouth during our time in South Devon. Bigbury and Brixham were closer and we had an 18 month old at the time, he was happy anywhere there was sand. I would have thought that there would have been more locals about taking daily exercise. We haven't visited the beach here since lock down began. I miss it as there's nothing quite as relaxing as just looking out to sea and watching the waves. It's something we do a lot and now we have no idea when we'll be back. The information changes all the time.
I received my Government food box this week. Rice, pasta, pasta sauces, soap, UHT milk, tinned meat, tuna, tinned soups, potatoes, carrots, apples and oranges, one loaf of white bread, breakfast cereal and more. I've been ordering pasta, rice, cereal and flour from specialist shops, but delivery takes a long time, so the box is useful. I would prefer to pay for what I have though and I wish there was a charge.
I'm still limited in what I'm able to eat, just as I thought the C Difficile induced colitis was calming down and I was back eating fruit and vegetables again, I reintroduced lentils and sweet potatoes to my diet and the whole thing has flared up quite badly. I'm back to eating bland food, chicken, white rice, pasta, white soda bread and anything low in fibre. I'm no fan of white bread so I'm substituting with plain scones or similar.
Telephone GP appointments aren't much good for anything other than medication reviews. They're over too quickly and not very satisfying for either doctor or patient. It's like being on a conveyor belt. I absolutely agree with keeping your distance from the Royal Devon and Exeter at the moment. I think a hospital waiting room is the last place I'd want to be and staff may may be carrying the virus without knowing. I'm assuming that Raymond is on the NHS vulnerable/shielded list? My daughter has found that some of her patients who should have been included, have been missed out. She's written quite a number of letters on their behalf this week to ensure they are added to the Government list.
The thread has livened up a little since your last post to me, otherwise, I agree that it has been quieter than usual. Maryjv is recovering from her surgery, which brings me to a question. Mary had drains fitted following mastectomy and I've noticed that this is the norm in America. I didn't have drains and was told during my pre surgery consultation, that they weren't necessary. I wonder if you know why some people have them, while others don't. It seems to me that they are an added infection risk. I did have a large seroma post surgery which lasted for months. I could have had it drained, but as it wasn't painful, I left it alone. Seromas, like large breast cysts, (I've had too many to count), have a habit of filling up again very quickly. Also, I didn't want to risk infection during chemotherapy.
Raining here at last. This will save me the bother of watering what the slugs have left of my seedlings.
Hoping that you and Raymond are keep well.
Love,
Gill xxx
0 -
Hello Kath,
It was so nice to see you back on the thread and no need for any apologies. We all know what a difficult job you are doing and the long hours that you are putting in. Please remember to keep safe and to get as much rest as you can.
We do tend to get bits of news about what all the different parts of the world are doing to tackle this virus. In the UK I tend to think that we could be doing better. I am not sure that I trust the numbers we are being given each day about the number of deaths in hospitals from the coronavirus. I think above all the government is trying to cover up how years of underfunding and no planning ahead has caused a crisis in the NHS.
We have been in lockdown since March 23rd, that is four weeks and the way the government is talking about a further three weeks seems to imply we have only done three.
I hope you are keeping well and looking after yourself as best you can.
Love.
Sylvia xxxx
0 -
Hello Marias,
Thank you for popping in and updating us on what is going on in your country.
I was glad to know that you are keeping safe and keeping as isolated as you can.
I feel so sorry for the poor people that are living in crowded conditions and cannot do social distancing. It is always the poor that suffer the most.
Here in the UK the government in London loves to talk about equality and how this virus does not distinguish, but of course it does. Not everyone has the luxury life of the politicians and especially the present Cabinet. I was disgusted to read recently that the politicians here had increased their salaries and their expenses because they were working at home! It is a pity that they did not give the frontline health workers a rise in their low pay in the past. What I see from this situation is that essential workers have been clearly sorted out from the non essential ones and of course it is the essential ones who have never been paid for their true worth and their essential role in society.
There is a lot of murmuring about big changes to come after all this, but I doubt it. The profit motive and cheap labour will always be the swan song of the rich and powerful. That is why we moved most of our manufacturing to countries where the workers are paid next to nothing.
Take care and stay safe.
Abrazos.
Sylvia xxxx
0 -
Hi Helenlouise,
Yes, isolation is difficult and the longer it goes on, the worse it feels. With a low white cell count, you have no choice at all. Does this mean that your husband is also isolating?
I'm sorry that you may not be able to manage more Paxlitaxel. I've been reading some information on this site about Perjeta, how it works, side effects and so on. It's good to know that you have another option. I hope it leaves you less exhausted than Paxlitaxel, though fatigue seems to be par for the course whichever cancer treatment is on offer.
Good luck with your targeted therapy, isolation and with this whole pandemic nightmare.
Love,
Gill xxx
0 -
Hello Mary,
I am always glad to hear from you. I can understand how you may be feeling low in spirits. I think the situation is wearing us all down. I am usually very energetic but I am finding I am having to push myself to find some motivation. Above all, I am fed up with politicians and I find the daily news briefings from the politicians and their 'experts' very disappointing and somewhat superficial.
I was glad to know that you had a look at Exmouth seafront. It is usually full of people at this time of year. I do not know if you had a look at the main square in Exmouth. I had a look at it yesterday but the picture was not very clear and it was dark because it was sunset. Have another look. Usually it would be full of people and tables outside from all the restaurants and cafes. It is all very sad and dismal.
Raymond and I have been listening to the daily briefings from President Trump and his team, so we know all about ending lockdown gradually. What do you think of Donald Trump lately? He seems to read his speeches without any intonation as though he is struggling to read or understand them. Do you think he has had enough of everything?
Our Prime Minister has disappeared into his country retreat and has left things to the weak people that he put into place as the main part of his cabinet. They are good at reciting their parts, but do not answer questions. They just want to save face for what they have done to the NHS.
I think the main problem with this coronavirus seems to be that the complication is viral pneumonia for which they have no drugs, whereas the complication from flu can be bacterial pneumonia for which they can give antibiotics. I am not a doctor but that is how I see it.
You can find lists of supposedly antiviral treatments but not in orthodox medicine. Do any of these work?
It is true that in the UK that cancer treatments are being delayed because all attention is focussed on the coronavirus. I saw on the news yesterday that CT scans were being set up and done in a car park of a hospital. There is also a lot of ageism going on in the UK and I think that anyone 70 and up or even 60 and up is better off keeping away from the hospital. I think the politicians are setting generations against one another.
Raymond continues to make progress and his leg is looking a lot better but there is still some swelling in the foot. He did have a telephone appointment with the GP but it was quite brief and not very satisfactory. We are trying to sort out the medication he is on, and has been on since January 25th when he was admitted to A&E. Before that he was on virtually no medication. We have serious doubts about Atorvastatin and statins in general. They are supposed to be for lowering cholesterol but Raymond does not have high cholesterol, but the information says you still have to take them with 'normal' cholesterol. The information also says that they should not be taken by people over 70. It is all very confusing. What do you think about statins?
Thank you for your best wishes for Raymond.
Keep safe, Mary and come to us if you need to get things off your chest.
I do hope that your weight loss is nothing about which to worry. I have also lost weight but am trying not to think about it.
Love.
Sylvia xxxx
0 -
Hello Helenlouise and Gill,
Thank you for your posts. I shall answer later when I have had a break.
Love.
Sylvia xxxx
0 -
Hello Gill,
Thank you for your post. The local people here do tend to walk a lot. They do walk the seafront and they do walk their dogs, but I think a lot of them walk early in the morning. I see people walking along the avenue where I am and again I see lots of dog walkers, joggers etc. When Raymond and I do our walk along the avenue to our local Co-Op we do see people doing their social distance walking and they are always cheery and friendly.
I was interested to know that you had received your government food box.
I was sorry to read that you have been having problems with your C Difficile induced colitis and that you have had to stop your high fibre diet as high fibre is so important. I do hope it will calm down and that you will be able to get back to food such as lentils and sweet potatoes.
Raymond is not on the NHS vulnerable/shielded list and we are glad that he is not on it. I think he was too far from his surgery date February 14th to be classified as vulnerable, even though he was told it would take three months to recover from the surgery. He has now gone nine weeks since surgery and is doing well. His recovery is based on regular walking so being confined completely to home for twelve weeks would not have done him any good. The food box would not have been of any use to us and our GP would know this. We are very strict in what we buy.
Raymond did have a telephone appointment with the GP but it was short and not very useful. His appointment at the hospital for a check up has been cancelled twice and the latest date is July 3rd, so we shall see what happens then.
The group is still quiet because we have no new people joining. We are a small group of regular posters and that includes you and me, as Brits, Mary and Maryjv as Americans, Kath and Helenlouise as Australians, Marias from South America, Jags56 from India and adagio from Canada, who pops in when she can. I think lots of people are probably in groups on Facebook. I looked at the Active Topics yesterday, four pages of them, and I noticed just one Brit who was ER+, PR+ and HER2- and seemed to be having quite a difficult time with treatment with this coronavirus being the main focus of attention at the hospital.
You asked about drains. I certainly had drains after my right breast mastectomy in 2005 and was in hospital for five days. At that time you were kept in hospital until the drains were clear and could be removed. I think that today patients come home with their drains and have visits from the District Nurse to check on them. I was glad to have them removed when clear at the hospital. I never had any problems with infections or seromas.
Remember that I had my six months of chemotherapy before surgery.
I do know that the people I know who had their breast cancer treatment back when I had mine, but did not have triple negative, are still well and have kept in the clear.
Raymond and I are having a quiet Sunday here and are sorting out a few things. Yesterday's rain was very welcome.
Keep well, keep safe and do not overdo things.
Love.
Sylvia xxxx
0 -
Hello Helenlouise,
Thank you for your latest post. It is always good to hear from you. As you say, we are all living in very strange times and none can be stranger than this strange country in which I live, UK.
We always seem to get things in a muddle.
I was glad to know that you have a Taxol treatment (paclitaxel) behind you and I hope you will recover well from that. The taxanes seem to be quite a difficult drug for some patients to cope with. The filgrastim should help to deal with any bone marrow problems. I do hope that you manage to complete your chemotherapy.
I am not surprised that you are feeling exhausted as the chemotherapy part of the journey is what patients seem to find the most difficult. Are you in complete isolation or are you allowed a walk a day as most of us here are. As Gill explained, those people considered the most vulnerable are supposed to remain completely isolated for twelve weeks. That is very difficult as we go into late Spring and summer.
There was talk yesterday here of making those aged 70 and up remain in isolation for a year. that is not very healthy and people do need about 30 minutes in the sun to get some vitamin D and we all know how essential that vitamin D is for our body.
That is about all for today. Take care of yourself and remember to ask us any questions about your treatment that may be bothering you.
Love and best wishes.
Sylvia xxxx
0 -
Hi Sylvia
I did look at the main square in Exmouth yesterday, there were a few more people out and about, all being respectful of the distancing. It's a very attractive and neat-looking town from what I can see.
You mentioned Donald Trump looking down and reading in an automatic matter. I would think that he and any of his team that are out doing daily briefings and being given updates constantly through the day are probably exhausted. When Donald Trump is reading speeches in an monotone, I believe they are written for him and are meant to be informational without off-the-cuff additions. When the speeches turn to press conference, he becomes livelier because I think that is what he enjoys, speaking off-the-cuff. Trump is 73, his vice-president is 60. The two CDC doctors who are running the medical part of the team are Deborah Birx, 64 and Antony Fauci, 79. I am amazed at the energy they all seem to display.
I am very sorry about the battle the Democrats in Congress and most of the media are waging against Trump at this time. If they put some of their efforts into uniting with Republicans against this pandemic and its' consequences, it would do far more good than only thinking about the next election in November.
From what I have read, medications that treat viral diseases are rare. Vaccines are rare too, finding one against this covid19 may be a pipedream. A vaccine has not been found for AIDS, or SARS. A cure was found for Hepatitis C about 5 years ago, but no vaccine that I know of. We have Tamiflu, which, if given within the first couple of days after contracting flu will help with symptoms. But what I have found in my experience is that in the first couple of days it is hard to tell if one has flu, or just a cold or sinusitis that will pass on its' own. I took tamiflu once, but it upset my stomach badly. I decided to take my chances with the flu. Then there's the flu vaccine, which as we all know, does not necessarily keep one from getting flu, but can decrease symptoms.
I do believe cancer surgeries and treatments are going on here. Usually Cancer Centers would not be used for infectious disease patients anyway, so would be available. Surgeries are performed in hospitals though, not sure how that works. I do know a local man who found out last week he has serious pancreatic cancer, he is being sent a couple of hours away to St. Louis to have surgery. Apparently there are only 2 doctors in the state that do this kind of surgery. I wish I knew more details.
I was scheduled to have an MRI on breast next week, to precede my semi-annual oncologist visit to follow a few days later. Someone called Friday to say the usual MRI machine is not working, and if I want to have it I would have to go somewhere else. They rang me through to the oncology nurse but she didn't return the call, she is off Fridays. So tomorrow she will call, and we will figure this out. I was thinking of postponing the whole thing but since I have lost weight I wanted to keep the appointment. I did call my General Practitioner later on Friday, and asked his opinion about the weight loss. He asked about how I felt, and if I had any digestive issues, coughing, blood coming from anywhere etc. He said it was entirely possible to lose that amount of weight when I told him the routine I have been on during these 5 weeks of being home all the time and doing a lot of activity. He recommended I keep my oncologist appt, he said if nothing else it would ease my mind.
I am so glad Raymond can exercise every day and is getting better. As for the statin, I'm not sure. My brother takes it as well, his cholesterol was only 2 points over normal and he was put on it. Perhaps because my father died at 68 of a heart attack, not sure. I don't know what I think really, I read that even if one doesn't have high cholesterol the drug can keep plaques from the bloodstream which is good. Do you know Raymond's HDL and LDL? The HDL should be high and the LDL low, if vice versa I think statins are also used. I would think with your diet that Raymond's HDL number would be good. I also think that some doctors think statins are awesome, and they prescribe them more readily than others. I learned that from Doctor Radio when I listen to the Heart Programs. Now Doctor Radio is all coronavirus all the time.
I would think your weight loss might be as mine, from a lot more walking in the nice weather, and perhaps a bit more stress, from all you have been and are going through. I will keep you posted on my end!
Now I will be off
Talk to you later, Love, Mary
0 -
hello ladies,
It always good to read your news and conversation. You are my private links to the real world. So much more meaningful than the nightly world ‘news’. It’s sobering to read your perspectives and the particular challenges each of you face. It’s good also to hear the odd happy news which is much appreciated these days.
I think I have passed the point where the bone pain from the pegfilgrastim is an issue and I have survived on paracetamol and some anti nausea. So YAY! We are isolated but do walk each day (I miss the odd one when too tired). Thank goodness we have a garden to enjoy. My husband, Gary, does the shopping and other errands. I get to go to the cancer Centre and that’s about it at the moment.
I do have a question that your collective wisdom may be able to advise please? I have what I would call a sluggish bowel and maintaining some regularity is a real challenge. I have been prescribed all manner of medical preparation and dislike them all. Any hints or tips on what works for you please? Sorry it’s not the nicest of topics but any suggestions will be appreciated.
Hope this post finds you coping with COVID and staying healthy and safe.
Helen x
0 -
Hello Helenlouise,
I think the lack of vigorous exercise, which is impossible for you to undertake presently, will add to your bowel problems. Paracetamol can cause constipation in some people (me) but this isn't a known side effect. I have colitis which is in some ways, the opposite of your issue. I avoid high fibre foods like potato jackets, beans, Brussel sprouts, cabbage, pears, lentils, dried pulses, coffee, unless decaffeinated and above all, nuts. You could try eating what I have to avoid. Paxlitaxel causes problems for almost everyone I speak to. Drink plenty of water - I know you'll already be doing this. Fruit which contains sorbitol helps to draw water into the gut which softens and bulks out. Try apples, pears, prunes, figs dates, plums apricots or dried fruit. Good luck!
The usual confusion here in Blighty. Not enough testing kits, not enough protection, gowns, aprons, visors or masks, not enough doctors or nurses, not enough information. On the upside, we no longer see or hear from Boris Johnson or Dominic Cummings, the weather is good and people are (generally) being nice to one another.
Keep as well as you can, hope the targeted therapy is easier to tolerate.
Love, Gill xxx
0 -
hi Helenlouise,
I'm sorry the treatment left you in this uncomfortable state. I would guess some of the bowel sluggishness is from the anti-nausea drugs. I would get very bound up from the steroids and the anti-nausea during treatment.
I also had this constipation problem after my 2 shoulder surgeries last year, caused by the pain meds. I used the product Miralax, it's an unflavored powder, active ingredient Polyethylene Glycol. Package says take once a day, my niece the hospital nurse advised starting with 3x a day,; it didn't take long and things were moving again. I know that doesn't sound very holistic but it is a short-term treatment. And try to eat as well as possible. I have diverticulosis, so tend toward sluggishness always, so I use psyllium husks regularly. And only reach for Miralax when having problems.
I hope you will be feeling better every day, and all these viruses and such leave us all alone. I was working in the yard yesterday and remembering when work would have to be stopped because I had to go to a wedding or a birthday party or a baby shower. Not now, so I keep working and today I am sore again. I admit I do rather like not having to get spiffed up for a party!
Feel better, take care
Love, Mary
0 -
Hello Mary,
Thank you for your latest post. I think that in both of our countries the coronavirus has been politicised and that on the whole the parties are just trying to score points.
I do agree with what you said about medications for viral diseases. We can find lists of possible anti-virals but I am not sure whether any of the work. I do wonder whether a vaccine will be found for this particular coronavirus. I think there will always be pandemics.
If your weight loss is really worrying you I do hope you get an appointment with your oncologist if that will give you peace of mind. Remember that you have been very physically active and that can take off the weight.
I think it is quite difficult to make up one's mind about medication in general and statins in particular. They are supposed to be for lowering cholesterol when a low cholesterol diet has failed. Apparently diet has only a minimum role in this and it is the natural cholesterol produced in the liver and delivered throughout the body that is the problem. Statins stop this natural production and I cannot think that is right. The body needs that cholesterol, especially the brain and especially as you get older. Statins have lots of nasty side effects, such as muscle pain and ache, muscle weakness, swollen ankles and an awful condition called rhabdomyolosis. A friend of ours has this and it is irreversible.
We do know all about HDL, LDL and triglycerides and Raymond's has always been normal. We shall probably get a blood test if the surgery ever gets back to normal after coronavirus.
I do agree that doctors think that statins are another wonder drug. I am afraid I do not agree and I think they are being prescribed too easily. It does say on the leaflet that it may not bee suitable for people over the age of 70 and yet I bet most older people are taking them. I do wonder whether there is a connection between long term use of statins and dementia.
I do hope you get to see Exmouth seafront and main square when we are back to normal.
I am trying to get back to some kind of normal routine but I find that I get quite fed up with all that is going on. I am trying to read book entitled The Skeptics' Guide to the Universe – How to know what is real in a world increasingly full of fake, by Steven Novella. I have not got very far. Life is so abnormal under lockdown and after four weeks of it we have just been told that it has been extended for another three weeks.
That is all for today. Take care.
Love.
Sylvia xxxx
0 -
Gill
I have to tell you I just spent 25 minutes on a post to you, felt very good about it, hit the SUBMIT button and it just disappeared. I am hoping it magically appears somewhere, or I shall try again later.
Best wishes for now, and hope you win the battle of the Slugs!
Love, Mary
0 -
Greetings everyone from Vancouver Canada.
It would appear that things are much the same all over the world - what an odd time in history? Glad to see that most of us are coping the best we can. I am getting a little discouraged and a bit depressed about the possibility of life being this way until a vaccine is created. I try not to read so much any more about covid since there is so much conflicting information out there which is super confusing.
My CT scan was scheduled for this week, but has been postponed - so who knows when it will be - fortunately I am well and I can wait.
Sylvia - happy to hear that Raymond is improving.
Gill - so sad that your c-diff gift is causing you discomfort.
Kath - your life sounds hectic - thank you for what you do for your people.
Maryna - your weight loss could simply be due to the fact that we are all somewhat stressed about the virus - plus - eating more healthy foods and walking every day could play a part. I too have lost about 7 lbs - but I do not overthink it - I feel fine and that for me that is what's important.
Helen - glad you are surviving the chemo and I hope that you have managed to get some relief from the constipation - it is one of the many side effects of a lot of the drugs.
Marias - lovely to hear from you in Columbia.
Keep safe everyone and let's hope that things will start to get better real soon.
0 -
Hello Sylvia,
Lovely bright Spring weather here, but cool in the strong breeze we've had for the last three or four days. Not really gardening or outdoor painting weather and I have a lot of work from the archive to catch up on. I made the mistake of taking several archive boxes home the day before lock down, so now feel bound to work my way through them.
I did some research on drainage tubes following mastectomy. It seems that some studies show that there's no difference in seroma formation between patients with drains and those without. My surgeon doesn't use them and he has many years of experience in breast surgery. I know they are essential with longer, more complex surgeries such as reconstruction. He explained that mastectomy was superficial, very quick and uncomplicated.
I've recently been looking at breast cancer websites in the UK, Macmillan, Breast Cancer Now and a few others. I have to say that I found them patronising, poorly informed and out of date. I wish more people knew about this site. You're right that there are few British women here. I'm going to mention this forum to my breast cancer nurse when, and if, I have my scheduled annual appointment in September.
This Government response to Covid-19 is worse than I ever imagined it would be - and my expectations were extremely low to begin with. Senior civil servants, bullied, threatened and forced to retract the true facts. It's all becoming very Orwellian here. The pigs have taken over the farmyard and Newspeak is the only language allowed. In the meantime people are being turned away from the temporary hospitals because of staff shortages, frontline staff have insufficient PPE and are becoming seriously ill and dying and care staff and patients in residential homes are living in fear. I realise that these are unprecedented times, but the Government were not in the least prepared. Lies really won't cut it this time.
Now that the Norfolk and Norwich University Hospital has become one of the NHS 'surge hospitals', the private Spire Hospital will take over all chemotherapy during the crisis, according to Anglia News. There have been newspaper reports of cancer surgeries being delayed and postponed. Most other operations have been cancelled. I've only just heard the news about Spire, so don't know the details yet.
My daughter has posted some packets of dried yeast to me, at last I'll be able to make bread that will keep for a few days. Other than that and the runner beans finally showing signs of life, all is very quiet here.
Best wishes to both of you. Enjoy your walks in the sunshine - fingers crossed that there is sunshine.
Love,
Gill xxx
0 -
Hi Mary,
Bad luck! I shall await your missive. Wish this site would save stuff.
Keep well,
Gill xxx
0 -
Hi Adagio,
All is as well as it could be here in South Norfolk, apart from this dratted colitis. Good to know everything is fairly OK in Vancouver.
Like you, I'm finding the idea of isolating until a reliable vaccine is found, a bit too depressing to contemplate. I'm trying not to pin all my hopes on the large trial beginning in Oxford very soon. The University has been recruiting healthy volunteers between the ages of 18 - 55 in different parts of the UK. Apparently, scientists have made a vaccine by collecting samples of the cold virus from monkeys. The vaccine should work by stimulating the immune system, enabling it to fight more effectively. Brave volunteers. I wish them all the luck, (and funding), in the world.
Keep safe, well and hopeful.
Love, Gill xxx
0 -
Hi guys,
Anyone in this thread from UK and had their operation delayed?
I’m on here for my mum and to cut a long story short, she has triple positive breast cancer, is unable to take chemo or perjeta or herceptin due to a weak heart valve. Yesterday we were told she would be given Letrozole and an operation in six weeks time.
I am deeply angered by this. The next treatment should be an operation.
So today I spoke with my MSP and am awaiting his response.
Anybody else had anything like this happen to them?
I’m right to think that Letrozole will only block the estrogen part of her cancer yeah? Which means the Her2 is just left to spread vigorously.
Doll
0 -
Hello Doll,
Firstly, I'm so sorry that your mum and of course you and the rest of your family, are going through this. The shock of diagnosis takes a while to come to terms with, the feelings of panic can be suffocating at first. Give yourselves some breathing space. It's good that your mum has you to support her.
I don't know anything very much about triple positive breast cancer. You really need your surgeon or oncologist to explain chemotherapy treatments for patients with heart problems. I had difficulties in accessing chemotherapy and paid for a second opinion from a very experienced consultant at the London Cancer Centre. It cost about £350, but was definitely worth it. A second opinion is always an option, though travelling during coronavirus might not be something you and your mum feel like doing. I asked for a copy of my pathology report from my breast surgeon. This would be useful to have, should you decide to go for another opinion.
It's generally agreed that surgery is the most effective treatment for cancer and 42 days is actually very good. Here in the Norfolk and Norwich hospital the waiting time is the full 62 days ie the maximum time suggested by NHS England. I paid to go privately in the end, but would have had NHS treatment if the wait had been a little less. I know that like me, you will want the cancer out asap, so I completely understand your concerns regarding the wait. I don't know if this helps, but I had a mastectomy and was surprised at how quick and how painless it was. Very quick to heal and only a small, neat scar left.
I'm sorry that I couldn't answer your main question. It's possible that someone on the triple positive threads will know more about chemotherapy treatment for those with heart issues. Has your mum been given a breast cancer support nurse? She will almost certainly have come across similar problems to your mum's.
Good luck.
Gill X
0 -
Hi Gill,
Thanks for answering and so thoughtfully.
Mum's oncologist is very good and has been kind and supportive. We don't doubt that chemo and Herceptin and perjeta are not a good treatment. But we are doubting the decision to only dish out a few tablets, which are given usually at the end of all treatments to prevent recurrence. I was told on our meeting that they were short of anaesthetists and that is what THIS is about.
I contacted my MSP this morning and gave him all the relevant details. I am being very clear here that, if they insist on sticking with this decision then I must have it in writing what process of evaluation thy used to draw their conclusions. I am also asking for information on what will be used to deal with the Her2 aspect of this cancer as everything I read states quite clearly that cancers left to fester grow relentlessly. I will not let this matter lie.
My mother has been distraught. As have the rest of the family.
I think you are right, I will ask for a copy of the pathology report and make sure that we have all the relevant information.
Can I ask, did you get a second opinion in London about chemo? Did you get treatment done privately?
I am not even sure my mum could get an operation at BUPA as all clinics have been turned over to the coronavirus.
D
0 -
Hi Doll,
I don't have private healthcare insurance, so had to pay for the mastectomy, (£7,500), myself. Worth it though, as my hospital had a reputation for cancelling surgeries and I wasn't prepared to take the risk. I think you are absolutely right to ask questions, push for answers and get them in writing. I'm afraid that now isn't the time to sit back and place all your trust in the NHS doing the right thing. Funding cuts, shortages of theatres and theatre staff, growing waiting lists and this horrible pandemic soaking up resources all have to be taken into consideration by hospital departments. I had a very difficult time getting chemotherapy as I had a rare metaplastic triple negative cancer. Chemotherapy doesn't work so effectively on metaplastic cancers, so my breast surgeon decided my cancer treatment should begin and end with surgery. I really had to put up a fight, my second opinion was worth its weight in gold. I paid for surgery only. I had chemotherapy with the NHS. My annual checks, mammograms and six monthly IV zoledronic acid treatment (to help prevent bone mets) are also NHS.
I'll PM you to let you know the details of my private consultant.
Gill xxx
0
