I know In my heart of hearts that treatment naive CLL patients are included in the high risk category but it’s either a massive typo or misunderstanding on my behalf when the information below is being sent out snout who is at risk:
“Cancer patients undergoing chemotherapy or radical radiotherapy for lung cancer, as well as those with cancers of the blood or bone marrow who are at any stage of their treatment.”
It’s quite conflicting, every time I read it my heart flutters but one second later I remind myself that this info surely is wrong?
Spiller
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spiller
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I think you might be hung-up on the final word in the phrase: 'those with cancers of the blood or bone marrow who are at any stage of their treatment.' Perhaps you're thinking that those in the 'Watchful Surveillance' stage (W&W) are not included in the warning because they're not 'in treatment.'
IMO ~ This is a misinterpretation of what constitutes W&W since W&W IS treatment, just that it does not include chemo or non-chemo regimens.
Done properly W&W is as much a treatment phase as any point at which one is ingesting tablets.
Yes I was wondering if W and W was classified as a treatment. It is. I have also now watched the Bloodwise video part 2 and I am about to show my husband who is finding this so difficult.
Is there any evidence that if a blood cancer patient gets CV that they could get through it ? Just working out how to talk about this with my husband.
Sadly, there IS evidence for CLL people NOT getting through the CV-19 status. So far, I've seen no reports for the far preferable opposite outcome. They may be occuring tho' they're not being shared.
As is the case for other opportunistic infections, the CLL body is ill-equipped to rebuff even a mild case of the virus.
CLL and CV19 are not good partners and should be kept at as far a distance apart as possible.
Caven that’s scarily pessimistic and I’m wondering what ‘evidence’ you are referring to. In terms of numbers and incidence of Covid19 in CLL’ers, I’ve heard of very few cases apart from the two in Canada. How many cases are you aware of?
The heterogeneous nature of CLL, our age, co-morbidities, environment, smoking history etc. plus level of immunosuppression must surely lead to a variance in response to the virus.
I’m staying safe but I’m also staying optimistic that I could weather this. We have to!
Hi Collette, positivity is a marvellous free medicine, but if you can stretch to a few pounds a single malt taken as a large dose in the evening certainly helps, lol, God bless, Terry
Great suggestion and if I run out of wine and gin I still have some Aberlour left ! These 12 weeks will clear those obscure bottles at the back of the drinks cabinet 🙂
Newdawn, you are correct that the data are very thin indeed about the prospects for a positive OR for a negative outcome for CLL-people who get CV-19.
I stand by my comment: "Sadly, there IS evidence for CLL people NOT getting through the CV-19 status. So far, I've seen no reports for the far preferable opposite outcome. They may be occuring tho' they're not being shared."
It's neither pessimistic nor is it optimistic to say that we've a paucity of evidence. However, it IS beneficial to state again and again the enhanced need for CLL-people to be especially careful about their exposures.
Yes, there's a great deal of variability within the CLL-group. However ... There's no evidence that CLL-status is anything but a problem in managing viral overload. And, if hand washing, social distancing, replacement of household air filters, sanitizing of food preparation surfaces, masks, avoiding doctors' offices, don’t touch your face in public spaces or high traffic areas, sneeze and cough into your elbow, discard used tissues immediately, don’t share foods, dishes, or utensils, use “inside clothes" once you get home, etc. If all this is good advice for non-CLL people (carers, like me) then it's crucial for those whose immune system is compromised.
Optimism is necessary but alone it is insufficient to stay healthy.
I agree we are at high risk. No doubt about it. However, it is possible that some CLL patients have been exposed, don’t even realize it was Covid 19 and have recovered. Just the same as what is occurring in the general population where some folks rebuff the disease much easier than others. The doctors don’t know so you certainly can’t possibly know. The news flow is turning decidedly negative and will continue that way for a while longer. Please don’t add to the gloom and doom without facts.
I believe I probably had it for most of February. At the time it was assumed it was a nasty flu followed by respiratory illness. As I hadn't knowingly been in contact with anyone from China or Italy I wasn't tested. However I do a couple of shifts at weekends in a pharmacy so in fact I can come into contact with anyone! Reading about the progress of it online, I started with a dry cough and then temperature for four days including severe headache and sore throat. Then the aches and pains and respiratory problems. After two weeks I felt better for about three days but then started to run a temperature again and have chest problems. Saw a Locum GP who told me to go home and stay in bed for a week and rest completely otherwise it could be serious. She frightened me and I did as I was told and literally slept most of the time. My chest is not completely better but overall I have recovered. Been having a flu jab for 13 years now since I was first diagnosed but I've never had such a bad illness as this before. It's all too much of a coincidence so I really am pretty sure I've had it. Can't wait for a test in the future to prove it. However I convinced I am a 'survivor!'
My husband, who is never ill and our 39-year-old son also had it after me for about five days. Both of them went to their GPs as were feeling so ill. My husband was given steroid nose drops for the headache which accompanied his cough, temperature, and sore throat! My son was told he had pleurisy, ( out of nowhere!) His two-year-old son had a particularly nasty cold for three days as well, I normally look after him two days a week. It's just too many coincidences.
Caven, I fully accept that the safest strategy is not becoming infected in the first place and we all need to do everything possible to achieve that. However, we are an evidence based site and doom predictions where you acknowledge there is a ‘paucity of evidence’ can serve no purpose apart from generating fear.
Whilst my CLL was pretty advanced, I suffered a severe pneumonia with sepsis that should have killed a strong horse. I’ve also survived a viral infection again with sepsis. I’ve no wish to fight any further battles but I refuse to believe fatalistic predictions. We really can’t afford to think in that way.
I’d like to concur with you too, I’ve had enough complication with CLL in the past for my ICU consultant to state to my family that ‘ there wasn’t a suitable figure that would adequately describe how unlikely it was that I would survive” - yet here I am
My father had the Last Rites 3 times over 10 yrs and on the second occasion was sat up in a chair reading the paper when the Priest arrived the next morning! He hadn’t given his permission either and sometimes we beat the odds like you did.
However, I don’t intend to mess with this rotten virus. We can’t underestimate its savagery but we must never let it take our sanity or humour!
I have a good pal Sepsur who has been given 6 months to live so many times by his doctor he insisted on one visit to his doctor to pick another number than 6. It could be 3 or 9, just not 6.
He is still ticking many years later. His explanation to me for his longevity in the face of his medical challenges? “Bad weeds are hard to kill” was his answer.
He’s a good pal, but bad weed does kind of fit. He would be at high risk of dying from covid, but I’d bet on him any day.
I can see both sides of this discussion. Caven is absolutely correct that we are not aware of any cases of covid19 among CLL patients which have had a successful outcome. But you are quite right the absence of evidence is not the same as evidence for something. And whilst we can presume some of the patients in Italy would have had CLL we cannot say the same about China since it has a much lower rate of CLL than the Caucasian population.
We can say that around 95% of patients with cancer who did catch coronavirus did survive in China.
The most concerning aspect of this virus is that it is unlike any we have seen before and so none of our antibody store from old infections will be matched to it and we don’t have much ability to create new ones.
So we are wise to be extremely cautious and that is why I’m currently mostly remaining in my bedroom and not even interacting with members of my family even tho all but one of them has not interacted outside of the house for almost two weeks. That one only came into the house about a week ago now. But I have to imagine that each of them have got coronavirus already and I don’t want to catch it from them. And I have to remember that meeting any of them is as tho I meet anyone they have met in the last three weeks (or at least two).
If your family can isolate too great.
If not you have to isolate from your family also.
I’m very happy to self isolate spending 90-% of my time in my bedroom.
Hi Spiller. I am treatment naive, watch and wait for 5 years. My specialist nurse said not to work as just having CLL made me immunocompromised . However, she did say that as I was stable if I caught it I would be expected to make a full recovery.
Wow! That’s such a lovely piece of news. I try to interpret what is being said by various people in authority ( Bloodwise etc) but it is so difficult.
My dream would be for each persons haematologist to write a bespoke letter to them outlining strengths and weaknesses of their particular case.
I have just shown the Bloodwise video to my husband and 2 children so everyone now knows basically what news is coming tomorrow. For my part 12 weeks of being indoors is heaven......y to he workday outside us too chaotic for me right now.
Bottom line is we are all at risk of serious complications and even potentially death from this. I don’t think we should try and wriggle out of that. As hard as it is.
That is NOT to say that we would all die if we got it. In fact I really Hope most of us wouldn’t. But I don’t know of any reliable way of predicting who will do well.
I think it’s unclear as to whether those in watch and wait are as much at risk as those in treatment. But watch and wait is not treatment, indeed people in watch and wait are considered treatment naive.
I am not taking chances and assuming my reaction to covid would be severe. I think everyone with Cll, treatment or not, should be extra vigilant and assume covid is more dangerous to them.
I think when the data for Cll does come in, we will see that those who are young, healthy and in early stage Cll will have done better than older Cll patients who have been treated or are in treatment. I think those with Cll without comorbidities will do better than those with comorbidities.
I agree. Even when it comes to our ability to respond to vaccines, that's equally as heterogeneous as how our CLL is expressed. Some of us do very well making antibodies to vaccines after years of living with CLL, so we should be able to respond similarly to a coronavirus infection.
Obviously not coming down with COVID-19 is preferable, or at least not while medical services are overstretched, but never forget that unlike most of the population, we've learned about the importance of reducing our infection risk, in particular by regular hand washing and avoiding touching our mouth, nose and eyes. That has to help reduce our risk of contracting COVID-19.
CLL is so heterogeneous, it’s impossible to assign a specific risk to the whole group. It would need to be based on individual blood chemistry, IGG status etc. Some folks in watch and wait or post treatment remission are much healthier than the general population.
I think most of us know how frequently we catch a common virus, how long it takes us to recover, and whether or not we always need meds to aid our recovery. That's how I get a feel for how well my immune system is working, or flagging. That's why I'm in isolation.
We all need to heed our medical team's advice and trust our own judgement. This isn't a good time to look for untrained opinions about our safety.
Stay safe, and dont worry about getting everyone to agree with your decisions to protect yourself!
As far as I can see, all the comments refer either to patients on W&W or currently undergoing treatment.
I'm in long-term remission (7.5y)... so, what is the state of play for those of us in that position? Are we also included in the 'at risk' category, or not? Or is it case-by-case?
FWIW - my health is pretty good, I rarely have infections - nothing so far this winter - and feel fine BUT I no longer go to the shops or meet anyone except my wife and mother - and daughters at 2m plus hailing distance.
Took the bike out to the countryside this morning - saw very few people, didn't come within 2m of any of them, and very brief proximity as I whizzed by (OK, that's a bit of an exaggeration, but still...) so I reckon that's safe enough, unless a rare boy racer 'collects' me!
One thing I forgot to ask - I'm due for a 6-monthly check-up soon, but as I feel fine, I think that it's safer to give the hospital a miss this time around. Any views on that?
While we are close to a CLL cure, CLL research specialists acknowledge that the major remaining challenge will be reconstituting our immune systems to normal when we are cured of our CLL. That doesn't mean that all of us post treatment are equally long term immune compromised - again that varies from person to person. If your blood counts, including your immunoglobulin counts are in the normal range, then given your experience with infections, you can take some reassurance. Just temper that with the knowledge that some people with healthy immune systems do fare badly with a COVID-19 infection, particularly if they are in an older age group.
Keep your distance from others, which would likely extend to skipping or rescheduling a check up if your specialist considers that's what's best for you.
Thanks, Neil. I was intending to 'phone the (very helpful) specialist nurse to discuss missing this check-up.
Even though I think my immune system is in reasonably good shape, I'm not taking any chances - as I say, my mother (who rarely goes out nowadays, and will not be able to go anywhere much without my help) and my wife are the only close contacts ATM.
I do think there has to be a degree of common sense about how the 'rules' are applied... in the UK, the government is too lax. Watching French TV, the whole country is in lock-down, with people being confined to 50m from their homes, except to shop for essentials and to go to work if in an essential service. This is better, but for someone who lives in sparsely populated countryside, it makes no sense so long as they keep a distance from others. Seeing holidaymakers in the UK flock in large numbers to the countryside today to enjoy some much needed sunshine made me cringe - there were lengthy traffic jams in Snowdonia! Crazy stuff.
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