So we are now 3 weeks into our 12 weeks of lockdown, what about life for us once the restrictions start to be lifted? If we look at China, after 10 weeks of lockdown their lifestyles are starting to get back to some degree of normality. But what about those with compromised immune systems? There is the risk that further waves of the virus are going to be a concern. The probability that a vaccine will be available in the short/medium term is remote, and when it is available, that we will actually mount an immune response.
So where does that leave us, in the months that follow the lockdown being lifted? Personally, I am unable to see me, or my wife, going out the house for at least the rest of the year, or may be even longer. My reasoning, is that that the virus will still be in the community and the risk to us will still be too great.
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RobertCLL
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I thought about the same thing Robert they even think it's coming back in the fall. I will still be wearing my mask all year long (gloves to) it will be lifted but not gone, we still need to take precautions for a lot longer. Be safe😊.
the more important question is will the vaccine be one we can take?
there are currently 3 kinds-as far as i know. Live-we can't have. Dead-we can have.
However there is a 3rd kind they can ramp up that is actually-as i understand it-a shot that mimics a vaccine and tricks the body into producing antibodies. It's not the classic shot that gets an antibody response.
that's the one that may be a definite no-no like the live.
I have thought that, too. We hear a lot of talk about 'herd immunity' but I can’t see that is going to be much use to us and those like us with depleted immune systems.
Herd immunity works by an illness spreading through a population (perhaps aided by a vaccination program), thereby removing sufficient non infected hosts so that the disease dies out. Provided you don't get a host that no longer has symptoms but keeps shedding the virus, herd immunity WILL protect all of us. I've not heard of anyone still shedding the virus after full recovery, so having a "Typhoid Mary" situation wikipedia.org/wiki/Mary_Mallon is thankfully unlikely.
It has already been calculated that we need just 61% of a population exposed to SARS-Cov2, the virus that causes COVID-19, to provide this protection. One town in Germany has already been found with 14% exposed.
Lovely dream but I think this doesn't reflect the reality of how quickly any new vaccine will become generally available. There's a whole world out there that will not be excluded from our contacts and which can create new cluster we might come into contact with. The herd immunity theory is the fallback position of a government that has effectively given up on the old and those with real underlying problems.
How long it takes for herd immunity to protect us will depend on where we live and the effectiveness of efforts taken by our governments to slow the COVID-19 spread. Ironically, communities where medical support systems were overwhelmed by the spread abd where there were high fatality rates, will reach herd immunity levels earlier. Which brings me to the next topic...
Harvist, the science of what percentage of a community has to have immunity for a pathogen to stop infecting people is very well understood. Yes, developing and proving a vaccine will take time - at least 12 months and then billions will need to have it. Hopefully we will find one that works. A working vaccine is only one possible way we can eliminate the threat of SARS Cov2 becoming a constant threat.
That we successfully managed two other coronavirus outbreaks - the 2002 SARS Cov virus outbreak (not seen since 2004 en.m.wikipedia.org/wiki/Sev... ) and the subsequent MERS outbreak, should give us hope, despite SARS Cov2 becoming a pandemic.
This article examines 4 possible scenarios by which we could emerge from the current pandemic without creating a second wave spread.
ANY infection with an infection rate (R naught) of more than 1 has exponential growth. The whole purpose of social distancing and in the extreme, lockdown, is aimed at reducing R naught to less than one, when the infection will die out. If you look at the doubling time (just as used in CLL measurement of ALC), you can see dramatic differences by country, evidence that it is possible to stop exponential growth with adherence to appropriate measures. It will be very interesting to see how different countries negotiate the relaxation of restrictions.
I cant imagine being safe again. I am hoping that a drug will treat until a vaccine is sorted.
I have to go to hospital every 4 weeks for ivig. The consultant will do a phonecall but I still have to have my blood taken. The district nurse will come here. We are both in danger.
I dont want to go out and in the uk over ten thousand have died and numbers are rising. I cant visualise being safe for a long time.
I feel exactly the same as you! We’ve been shielding for 4/5 weeks I think (?!) and I can’t imagine ever feeling safe enough to venture out... 😢
Paul is due a blood test next month... was it easy to get a nurse to come to your house for it? Or was it their suggestion? We’ve already decided that going out for a blood test is not going to happen ☹️. We are wondering if Paul’s consultant will just delay his, what will be a phone consultation, for another 3 months. She has been talking about more treatment soon ( he had FCR 5 years ago) but he is very well, so maybe delay that for now...?
I saw a consultant at the beginning of March and she gave me a bloodtest form. This was unusual because I normally have blood taken at the same time as the consultation.
I booked an appointment with my GP surgery and she rang and cancelled the appointment. She said I wasnt to go out.
I then rang the support nurse at the hospital and she asked the district nurse to come. Although I had a bloodtest form, this could be got by the district nurse.
My GP surgery are taking phonecalls. They may be able to arrange a district nurse or if not try the support nurse at the hospital. If you do that, you could enquire about a telephone consultation. The consultant has sent me a bloodtest form for next time but I will have to book an appointment with the district nurse who said she was happy to come back.
Sorry about the long story but I think its a case of ringing round and explaining that your husband is extremely vulnerable and why.
The consultant cant do a consultation without the test and if they are worried about his numbers it is better to discuss things.
I normally go every 4 weeks and he will phone in 8 weeks next time instead.
The ivig is every 4 weeks and I will need to go for that.
I had fcr and it lasted for 5 years but it was another 3 years before I needed treatment. I have ibrutinib and had a few teething problems with muscle and joint pain but only occassionally now. Much better than chemo and its working. I get it delivered which is good.
This is a nightmare. We are wiping the food over and the table top its been on and washing our hands. We will just have to be thankful we are safe in our houses. Still doesnt stop us being scared. Anne uk
Paul always has a blood form from his consultant already, from his last appointment with her, so maybe a nurse will come and do a blood test here. I will ring the blood team at our local hospital, which is where Paul goes usually, nearer to his appointment date and , if I don’t get anywhere, I will contact the CLL nurse and see what she thinks..thanks for your suggestion.
I am so glad that the ibrutinib is working for you.
I am also wiping down any groceries that Paul’s sister kindly gets for us...I have to grab the chocolate quickly, to wipe it,before Paul gets to it,
Postpone IVIG infusions as risk of exposure to COVID19 may outweigh benefit of infusion during pandemic period. Consultant to assess on case by case basis. Consider stopping IVIG and give prophylactic antibiotics for 6 months instead.
My consultant thinks I should have, but I can see a reason to stop. Trouble is for how long. Im due in 3 weeks and then every 4 weeks. My immunity will be very low by then. I will ring and ask their opinion when I am due. They test my blood every three months to see how low it is before ivig that day. It will show if I can manage without.
I take co- trimoxazole 3 times a week and a small Nitrofurantoin as a prophylactic treatment.
It is something to think about. Its possible they may ring and cancel if they think I can manage without. I will read the article. Thankyou, Anne uk
I have been thinking along similar lines, Robert. All the government predictions about when restrictions can be lifted and life/business/economy can get back to (some kind of) normal pertain to the portion of the population that is NOT immune-compromised. I think the risk to us CLL folks remains for a long time to come. I am hoping that some effective treatments will be developed. It sounds like some already are. And I am also hoping that as the virus burns through the population it will become less virulent. Because, as others have said, who knows whether the vaccine will be something we can even take, or something that would even work for us if we did take it? Stay safe!
Hi Robert. I’ve wondered the same thing as well. I was supposed to go to Chicago for labs and CLL visit in March but moved it to May (not due to COVID19). Now of course I’m not traveling to Chicago in May but I haven’t seen CLL specialist since mid-December and wonder when it will be safe to go again..... For now I’ll stay local for labs w hematologist. But honestly even going into their lab worries me.
Yes, I totally agree. A vaccine that works, is not live and one our bodies can accept is the only way out of this mess for us and others in the same boat. I came to this conclusion some time ago and see from the posts that it's an anxiety and reality check we all share. Maybe if we all sing loud enough from the same song sheet, someone will hear us and produce a vac that focuses on compromised immune systems. Hope springs eternal!
Until then, let's keep our heads down! Cheers - Handley
Not to be a downer, but even a dead vaccine is not going to completely take care of all of us. Some of us don’t have immune systems that are healthy enough to gain the maximum effect for the vaccine. But any little bit of help will be better than nothing. A drug to treat or cure would be better for us.
I agree completely. An effective drug is our best bet. I had InfluenzasA 2 month’s ago and was started on Tamiflu and was felling well in 5-7 days. An effective antiviral is our best way forward.
Good question, not many answers yet. Some say this will be a seasonal flu and we will have to live with it until vaccine is developed. Once a vaccine is developed then we will be in same boat as flu shots we get now, may work, may not. Blessings.
Hi I agree with everyone else! I cancelled my bloodwork had an appt with oncologist first week of April and I canceled it. I go every three months so I guess I’ll go three months from now?? But like everyone here says I don’t know when it’s going to be safe for us the uncertainty is the worst. Hang in there everyone one.
I normally go for labs every 3 months same as you. I have to decide if missing one blood test is acceptable for me or not. I had very aggressive CLL with 11,000 WBC to 197,000 WBC in 14 months. I could quite easily be in relapse within 6 month period. However I also feel great, but keep check on my B-symptoms. I will be up for blood testing this month, but suspect I will put it off. Blessings.
I did not decide to start treatment based on WBC but rather(platelets, HB, Neutrophils). Baring info from blood testing, I will let my B-symptoms guide me until as I have blood tests.
Heard a virologist on the BBC suggest those shielded could be asked to stay in for 12 months or more or until a vaccine is available which I think would be horrendous.
I'd hope that once a satisfactory test is available that those of us shielded would get an opportunity to be tested to see whether we've had it or not. My wife is convinced I've had it because I certainly had a viral infection from around the 18th March until early April. I had all the symptoms, cold, dry cough (still got this slightly), loss of appetite, loss of taste & smell etc., etc. My issue is I didn't really have a fever (although was taking cold & flu tablets & paracetamol) & I didn't have any breathing problems, but I did feel really ill for a few weeks & don't consider myself 100% even now. Still I won't know if she's right unless I can get tested at some stage & if she is right we can get back to something like a normal life & shielding will become a thing of the past. The alternative is we stay shielded until the Gov tells us otherwise.
The only test that will tell if you’ve had it and come out the other side is an antibody test not the CV 19 swab . From what I read a vaccine is unlikely to be available for at least 18 months and as Aussie Neil said will cost billions .
I have been in isolation for almost 6 weeks now , once the first case was announced in Dublin I put the house in lockdown as I had been carefully following what happened in China and then right on our doorstep in Italy . Ireland went into lockdown before the UK and US , we haven’t peaked yet but the health system is so far coping and preparing .
I’ve been in hospital for the past 9 days (was swabbed and CV19 neg thankfully ) and now that I’m away from the Suspected Covid Wards I feel it’s a pretty safe place to be . Very strict procedures in place . An oncology nurse friend reassured me that it might be one of the safest times for a hospital visit/stay because even though I was very sick I was reluctant to go to the hospital and afraid like some of you .
Ive spent a lot of time reflecting in my cocoon and have concluded I will most likely have to adjust (yet again) to a new normal. However long that will be for is an unknown ...like this new virus . It won’t be without more sacrifices and challenges . I miss my daughters and my grandchildren desperately . I’ve had 2 friends die since lockdown and been unable to pay my respects and be physically comforted .
Those of us who are immune compromised are at risk of catching the flu , also a coronavirus, every year , which could also be catastrophic . The flu pandemic of 1918 wiped out 50 million people and infected a third of the world’s population . We get our vaccines every year because the virus mutates , but we don’t over think it . It makes us feel safer and we get on with our lives mindful of our compromised immune systems.
Science is amazing and scientists around the world are working hard to find a vaccine . Already plasma from recovered patients is being used to treat critically ill patients with some success , so who knows treatment might be available sooner than expected . I live with hope .
That’s all we can do . I wish you all serenity and hope you stay as healthy and positive as possible . Kind regards . Emer
Hi Emerfly, Thank you for this update. You have written of the isolation and the *new normal*. It is exactly what I have been feeling. Simple concerns of nodes, labs, medicine supplies and updates are stressing and unpredictable.
I plan to search YouTube for a short tutorial video on how to palpate your nodes & spleen. I’m a worrier.
If anyone has a link - please provide. Thanks!
As this progresses, we will all need this forum and the candor of members like you to keep our spirits up. Many thanks for this post.
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