Honestly right now the risk is such that we do probably want to do some form of self isolation as per the advice given to us in the Bloodwise link. AND we do want sick people to isolate. I totally agree with you about the “welcome to my world” comments. I have been at least partially socially withdrawing for a couple of years or so and making judgement calls as so many of us do (e.g. at one point I was happy to go on the tube train but avoided it during rush hour and wore a mask, then as my immunity got worse I stopped using tubes altogether). I have also been washing my hands and drying them on kitchen roll or paper towels NOT grubby towels other people have used and NOT hand air driers! There is a part of me that is a bit smug that suddenly EVERYONE is worried about people coughing etc. Just maybe the behaviour will last, but I do agree with the experts that people will get bored of it so I understand the stepped approach. But me personally I have decided no more church till the peak has gone, and I will be a bit more isolated than I already was (fatigue has been keeping me indoors a lot) but even in the peak I am sure I will feel OK with going to the local forest and having a short walk (keeping away from others of course!). I just wish I had the energy to walk for longer…!
All blood cancer patients and their families advised to stay home for twelve weeks
This was just put on the Bloodwise page on COVID19. Not sure how to broach this with my family and suggest that we ALL stay at home for 12 weeks???
This is a crucial piece of advice and I am sure is what was meant when during the press conference it was mentioned that various of those considered most at risk including Lukaemia patients would be given more detailed specific advice.
Essentially we are being advised that any contact at all with people could leave us at risk of getting the disease and at significant risk of death. Not only are they advising each of us to stay in our homes they are advising those who live with us to consider doing the same thing.
Bloodwise link:
Detailed guidance for social distancing from the Government which state
“Note: there are some clinical conditions which put people at even higher risk of severe illness from COVID-19. If you are in this category, next week the NHS in England will directly contact you with advice the more stringent measures you should take in order to keep yourself and others safe. For now, you should rigorously follow the social distancing advice in full, outlined below. . .”
In the list of conditions it includes
"People with cancers of the blood or bone marrow such as leukaemia who are at any stage of treatment "
(and clearly that would include watch and wait)
PM’s statement with CSO and CMO
Health secretary statement in Parliament
======= STATEMENT FROM BLOODWISE =======
Following the Prime Minister’s press conference on Monday, March 16, we have updated our advice on the coronavirus for people affected by blood cancer.
If you have blood cancer and have a weakened immune system, we now advise that you stay at home for the next 12 weeks. This is because the coronavirus can have more serious effects on people with a weakened immune system.
Those with a compromised immune system include:
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People having chemotherapy, or who’ve had chemotherapy in the last 3 months.
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People having immunotherapy or other antibody treatments for cancer.
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People having targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors (this includes TKIs).
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People who’ve had a bone marrow or stem cell transplant in the last 6 months, or who are still taking immunosuppression drugs.
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People with some types of blood cancer which affect the immune system, such as chronic leukaemia, lymphoma or myeloma, even if no treatment is being given.
If you’re not sure whether you have a compromised immune system, you should talk to your healthcare team as soon as possible to find out.
If you look after or live with someone who has blood cancer and has a compromised immune system, you should also consider staying at home for the next 12 weeks.
CRUCIAL question: What should be done about IVIG. We are currently do not use much sub cut immunoglobulin in this country which can be safely self administer by trained patients in their own home… So a lot of patients with blood cancers and immune compromise are going up to hospital monthly for a crucial infusion that helps prevent them getting bacterial pneumonias. Obviously there is a conflict between the “stay in your own home” advice and putting yourself at risk to go up to hospital to get the infusion. But if you are told the infusion will stop (which at least one patient has been) then surely that is exactly the wrong thing to be doing for patient safety and the NHS at the moment as the last thing we need is a group of people getting bacterial pneumonia at the moment. Can Bloodwise raise this with the NHS. I am not sure if it may be possible to either a. Arrange for a nurse to come and give the IV infusion at home (for people on established treatment with a predictable side effect profile) or b. rapidly implement sub cut with the first infusion given by a home visiting nurse who teaches the patients how to do it. In addition, it might even be advisable to consider loosening the requirements for IVIG if there are patients who almost qualify as it should help reduce the risk of other infections.
On a related point, I have seen comments elsewhere about the idea of using passive immunity i.e. the serum of recovered patients who experienced COVID19 to treat patients. Could Bloodwise enquire whether this is being considered in the UK and if so whether patients with CLL and other conditions that reduce the ability to create new antibodies could be considered for this. In various other disease outbreaks for about the last 100 years this approach has been used with some success. It would be great if Bloodwise could enquire if there is any way to facilitate this approach in the UK. Serum is not typically used from UK patients due to the small theoretical risk of mad cow disease but I suspect that many patients would be only too happy to volunteer for a trial of this treatment especially if they know they are not able to produce antibodies of their own.
I would also add that some of us who had treatment a while back, and who are no longer under hospital care are also in the 12 week category. I have lung and heart problems from my lymphoma and treatments, and have self isolated for a week now
I had a call from my consultant this morning and she is stopping treatment. I am halfway through FCR and have had a good response, all lymph nodes shrinking, some back to normal size and almost all lymphoma gone from the sinuses. The FCR has really affected my neutrophils, they are very low every month and this is why she has stopped treatment as continuing would put me at greater risk that I am already of Corona. Just preparing to isolate for 12 weeks. I know the advice is for family members to do so as well but my husband works with vulnerable young people who rely on his support and my son is self employed so it is very difficult. Worrying times for us all xxx
You really show the practical and financial problems of family members isolating with us. So, so difficult. Take extra special care of yourself and please keep posting so we can support each other.
I have a similar dilemma. Right now everyone in my house has nowhere to go anyway as their either working from home now or uni or schools are closed or in one case we just decided to keep him off. But part of me wonders about figuring out if I should be the one to leave to allow them to be free to do whatever they want!
Similar statement from CLLSA.
Adrian, a complete dilemma for you and your family which I am sure you will not be the only one tussling with and that there are no clear answers too. It sounds as if you are all as safe and sound as anybody can be. To me it also shows how caring you all are and how you are all working together.
Thanks Erica. How are you and yours managing it? For now we are just focused on the seven days left of family isolation from one of my kids who has a cough. And hoping that it’s not COVID19 whilst I’m practicing isolation within my own home not being in the same room as the others. Am about to go out Nd self isolate in a car that’s not been used for several days and try and get a very short walk in the forest giving everyone a wide berth.
When our seven days are up will think about what to do moving forward. Do I keep the adult kids isolated with me or do we move me or some of them out so they can move around more and maybe do some good at this time. It seems unfair to coop them up for 12 weeks coz of me.
My husband and I are self isolating, although I think fresh air is really important. I have just been on a walk along the Thames towpath with my Walkman and hoodie on, absolute bliss, who cares what I look like. Let us know how your walk in the forest goes.
I too made a break for freedom and went to Epping Forest today driving myself in a car that had not been touched for almost a week (still wiped it down) and was trying to avoid other people giving them a very wide berth!
Adrian, thanks for the photo, it looks a wonderful bid for freedom in Epping Forest.
Am wondering what form self-isolation needs to take for those of us who live out in the wilds. Would think we can go outside, and probably walk much as usual, because we can keep our distance from anyone we meet. Obvously silly to invite anyone into the home who has just come out from the town, is coughing or whatever. But what about the postie, who usually opens the door to chuck in the mail? And what about parcels which are delivered? My suspicion is that such items, which have been handled by lord knows who, under possibly unhygienic circumstances, could be quite a threat. What about our village shop, which outside the brief rush hour in the morning, rarely has more than one other person present in a 100square metre space? Any thoughts?
Awkwardly, had a hospital appointment about my prostate yesterday, and had to take wife to dermatology specialist today. Stuck all outer clothing in the wash each time we returned, wiped all the controls and door handles in the car, but in the end, it’s a case of risk management.
I am 75 years of age and have MDS RAEB2.
I have chemotherapy for 5 days in every 28 plus one pre chemo blood test the week prior to this.
I drive to the hospital earlier than my appointments as it’s impossible to park after 9am.
The hospital has sold off one of the staff car parks and the staff now use the patient car parks too.
I’d rather travel at a time closer to my appointments to avoid the crowds at the hospital but put my times at risk if I don’t get there on time.
Catch 22 situation!!
Best wishes to all
Anthony
Hi @Blackhat, @DickM and @Adrian, the more I think about the encompassing implications I think I will spend my whole day thinking and spiralling down. I have to laugh the postie has just rung the bell, what a dilemma, does that mean I don’t open plain envelopes, but what about a mothers day card. As we have all said more questions than answers. My appointment at the hospital for the potential return of my skin cancer on my head turned into a phone consultation today, so hopefully some areas of our hospitals might be actually less busy currently, but probably not the car parks. Thank goodness for automatic doors I say. I tell you what we will have the cleanest cars. Anyway we have sufficient food and loo rolls here, so we are very lucky and I am off for a walk along the Thames towpath again and I won’t touch anything, and whoops again, I forgot to sanitise the laptop and mouse before I used it. Take lots of care of yourselves special people.
i went to Boots this morning to collect repeat prescriptions, others also waiting were distancing.
Both of the staff behind the counter were wearing masks and there was striped warning tape in front of the counter to stop people getting too close. A very sensible precaution.
Over the road Iceland were letting 6 customers in when 6 came out, outside there was a queue 15 deep huddled close which defeats the object!!
Madness
Anthony
Hi, tehgovernment advice would be to try and stop going out from now if at all possible (walking in the wilds is fine if you are six feet away from anyone else). Post is likely to be less of an issue than anything solid or metallic. One option would be to leave the items in place for a couple of days before opening it, and wiping anything like say a can of food wipe before putting it in the cupboard. Its hard to know how far to go but you are clearly well isolated apart from the small risk of things being delivered. Remember that simply touching an item will not get you COVID19 even if it is contaminated provided you wash your hands before touching your face. SO maybe use gloves, but a wipe or simply a kitchen rolll with a bleach solution or even just soapy water would be enough to disinfect even a solid item.
Sadly there has been a second case of a person who was relatively healthy but had blood cancer passing away quite rapidly from COVID19. This was a person in their 50s with a chronic Lukaemia who was in watch and wait, working and healthy and sadly died from COVID19 in Canada. Press report:
This is another case to add to the 21 year old football coach with undiagnosed Lukaemia who also died:
In addition a 34 year old with a history of previous testicular cancer (and current asthma) has also died
This is obviously concerning to all of us, and underlines the governments advice that we should ALL consider ourselves as at high risk no matter what stage of treatment for any kind of blood cancer.
Please note on a slightly more positive side that even the most pessimistic estimates of the risk to us would still conclude that the vast majority of even immune compromised patients would probably recover but the risk of us needing hospitalisation, ventilation, ITU, and even subsequently death are clearly not a trivial percentage. We cannot hope to know the exact risks at the moment except that they are not small.
It is clear to me now why they are asking both us and our families to please consider self isolating including not going to the shops. If. you do not have any social contact with people you cannot catch this disease as hard as these steps are going to be. Personally I am considering moving out of my family home since I do not think it is going to be reasonable or possible to ask them all to remain indoors with me for the next 3 months (they have been for 14 days as one of them had a cough). I can report that I have managed to avoid catching that cough by mainly staying in my own bedroom and minimising all interactions within the home (plus obviously using my own towel etc). Can I keep Covid19 at bay in that way if it comes into my home? I am no so sure but certainly I can reduce the risk.
Lets lock ourselves up, throw away the key and hide from COVID19 (walks in the countryside where we are way more than 6 feet away from others are allowed at present). The UK government also advises patients who have families living with them to ask thier families to also consider joining them in isolation to the extent of not even going out to go to the shops or phamaccist for an initial period of 12 weeks.
They have published some of their scientific evidence here but not the details behind how they have determined our risk status (I suspect there must however be other cases perhaps from Italy where the patients families have asked not to be publicised).
UK scientific advice on modelling etc
Todays announcement re all clubs restaurants gyms, museums, cinemas, and pubs MUST close.
Everyone encouraged to reduce social contact massively.
Huge funding released to help businesses pay workers even those on zero hours contracts giving business the ability to put staff on paid leave (80% of the salary) and have the government pay for it.