Hi everybody in CLL land. I am looking for your help and information on what its like getting COVID. Is the outcome for us always severe or critical or do some get mild or moderate outbreaks. Just trying to prepare myself for what is to come. At the moment I feel fine as I am only 2 days in from a positive lateral flow test.
I am on W&W but have received a "no antibody " result . I don't know how relevant this is that to me although I would have liked a " Yes you have loads of antibodies " result.
Any information would be greatly received so I can plan ahead.
Kind regards Steve
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Strech51
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Currently that is only offered in hospital after a positive PCR and then testing to see if there are any antibodies present. As I understand it’s usually only given if we have no antibodies.
Hi. I don.t have antibodies and although I am still waiting for the results of a PCR test my wife's PCR has just come back positive. I shall be speaking to my teams about monoclonal antibodies but it seems that you cant schedule on here in the UK you have to go in when you get bad enough which does seem a little rediculas.
You need to have them administered while you still feel well , best during the first three days maximum 5 days after the infection. Later on they are of much less help.
It doesn't work like that in the UK which isn't good. We cant chose when we have it done or I would have had it. It seems its all down to cost. If we had private insurance we could argue the case. NHS gives it when when you have to be hospitalised.
The idea of giving monoclonal antibodies (Ronapreve is the only one currently authorised for Covid19 infection in the UK) is precisely to avoid being hospitalised with severe disease. Ronapreve must be administered in a hospital setting, but that doesn't mean you must be very ill to get it. The earlier you get it the more effective it will be.
In your place I would raise hell if I was refused treatment IMMEDIATELY following a positive PCR test and a negative antibody test.
Pros and cons of government healthcare...all about the $. See if you have the means if you can pay privately. In US (Florida at least) it's free, I can get it next or same day, no need to be sick or hospualized. No need to be in hospital to get. 1 hour process. No need for doctors order.
Thanks for that. Private healthcare would be good if you could get it. The NHS seems to buy it all up over here. There pros and cons over here is that there are many that use the NHS who never pay anything in. But that’s another debate which I won’t get involved in.
Good luck. In another scenario with cheap airfares you could get 8 months of antibodies for the price of a trip to Miami/ Orlando from London. Again if money was not the issue and a vacation too.
I asked the consultant yesterday and you have to have the positive pcr test. It seems you need symptoms as well. A different consultant rang me. He hadnt a clue about me but my blood is really good especially lymphocytes. I dropped to 280mg ibrutinib 2 months ago.Its just the covid to worry about now. Just got told that they have treatments but I might not be in danger!
Hi Strech51, there is some data on CLL'rs who get Covid, depending on your views, some like to know, regardless, and others would rather not nkow. I don't know where you are on that. Regards Ron
Hi, Considering you havent been treated it is strange you havent made antibodies. Have you had 3 vaccines? I was told to go to A&E with a positive pcr test. Be careful not to go near anyone.
I don't think it's strange. Even in W&W, dysfunctional B-cells can mean inability to make certain antibodies compared to non-CLL populations. Not being treated simply means the disease hasn't affected neuts, RBC's, platelets to the danger point, or hasn't caused symptoms affecting the ability to do ADL's unassisted. "Immune compromised" can include inability to make antibodies, regardless of having treatment. Which is why we need to be cautious; we don't know exactly how dysfunctional our immune system actually is without extensive testing.
How are you feeling? My 11 year old grandson felt really poorly and his 9 year old brother had a bunged up nose but not ill. The consultant said they couldnt tell because some people werent too bad but they had some who were really ill. That was before we had the antivirals and other treatments. I hope you are going to recover easily. Anne uk
Thanks Anne. Both me and my wife are fine at the moment but is early yet waiting for around Sunday for my wife and Tue for me. The not knowing doesn't help.
HiI had covid in the summer. I was being careful but living with three teenagers and a husband who are all coming and going with work, college etc was inevitable that I eventually caught it!
I had started treatment and was on my third infusion of obinutzumab when I tested positive.
I was lucky! I felt rough for a couple of days, lost all sense of taste and smell for a few weeks but apart from that was fine. A friend lent me a pulse oximeter which was comforting as was able to check temperature and oxygen levels.
My husband had covid in September this year and symptoms were just that of a cold, with 1 day of slight fever. ( also loss of taste/smell)
His first 2 vaccinations were during his recovery from FCR ( his neutrophils at that time were very low, and he then developed shingles, so immune system was obviously struggling)
We were concerned that he might not have any antibodies from the 2 vaccines and were relieved when he had his third one. However it was about 8 days after this that he tested positive ( lateral flow tests for work picked this up, and PCR confirmed)
I was particularly anxious about the path covid might take us on, as it can be unpredictable in at risk patients.
Fortunately he was ok, ( it then passed into me, and our daughter, similar cold symptoms with loss of taste/smell.
But now this is behind us, it’s truly liberating! We are on the other side of fear, and feel almost invincible, and can enjoy life again.
To give you an idea of how careful I’d been, I can now open door handles without holding tissues, touch cash machine keys, trolley handles etc etc. Stand near people without assessing their health and lifestyle, go shopping without watching for people getting close,
Let's hope that's it, and as Cheshire rightly says hopefully you will be able to relax a little if this course continues. Keep an eye to your blood oxygen though. A pity about the MABs but the NHS is a wonderful thing so hopefully someone has crunched data that it's not too risky to stall the administration of them for fiscal reasons.
I am sorry to say I think your behavior is risky. You all have less chance of reinfection, but it's not zero. (See stevesmith1964 comment below) And this behavior will allow other communicable diseases like influenza and common colds to get to you. While I don't use tissues to handle everything, I AM careful about not using fingertips. I wear gloves a lot, use the flat of my hand and knuckles, etc. and avoid breathing others breath.
Please don't think of being infection conscious as "living in fear" or not. It's more about learning new habits. I worked in a microbiology lab in college, setting up patient specimens. I had to learn a whole new way of handling/touching potentially infected material. There was a bit of a learning curve, but it wasn't hard. So moving forward, please consider continuing with "infection awareness". IMO it's more about being aware (like one is walking on icy streets) that being fearful, or not. Avoiding using fingertips when opening a public door handle, or using a knuckle on a cash machine, or keeping gloves in the car to pump gasoline, aren't difficult. Just a new habit, and it will reduce your infection risk.
Bit confused. My wife fought the virus first and passed it on. We had no indication she had it until she did a lateral flow test. We always wear masks in any shops etc. As soon as we get Ito the car we use antibacterial gel in the house we wash our hands regularly,
I may have sounded a bit too blasé about general hygiene, frequent hand washing is now ingrained in our behaviour, and carrying handgels is now part of everyday life.
what I was trying to get across was that we have no reason to live in fear of covid, certainly not at the level of anxiety that Covid and going through FCR has caused us since last Feb. ( well, at least until another dangerous covid variant or other nasty appears)
Living with CLL ( either W&W or treatment) is hard enough, relaxing and being able to enjoy socialising, eating out etc etc without being fearful of others nearby is a step towards normality for us.
Thanks for that. Its really hard to keep up the guard all the time. I was hopping that in England at least they would have enforced wearing of masks that is a way of remembering when out and about. But know Boris has his own stupid agender. So if you go out sometimes its only us wearing them. I think everyone is forgetting the impact on us. I must admit that before I got CLL I never knew about the issues was bricking it for a while before the Doc explained it to me and you guys gave me so much valuable info. Now I am back to bricking it over COVID but I do appreciate all get the info I get from here. Going to push my haematologist tomorrow to see if I can get the drug for me. ( Sorry forgot the name of it ).
We still wear masks in shops etc where staff working there do. It seems respectful to them as they haven’t a choice in coming into contact with the public.
I must admit to being disappointed and even scared when Boris got rid of compulsory masks and distancing, but as cases were still high I thought it was all just a calculated risk strategy ( or just a big gamble) to see how the UK would cope with the spread of covid after vaccinations,
It appears to be working though, even if a huge portion of cases are from vaccinated people.
My workplace has had more cases since August this year, than we had from the previous 18 months. It’s now just a question of how the economy can cope with 10 day isolations at these levels or even higher.
I don't have any faith in Boris he even appointed a Health Secretary to do what he wants. We could even have got the economy rolling again and still had to wear masks. Its just that those without health issues out number us.
I'm glad you are over the "fear" part!I totally agree with you. IMO our education systems (in whatever country) haven't really prepared anyone for basic hygiene like I believe the US did in the 1950's (or so I was told). I mean things like...don't touch your mouth to the water fountain, don't cough/sneeze into your hands, stuff like that. I was taught stuff like this at home, and then again in the hospitals I worked at. This "living in fear" concept has been so awful, when a "everyone be cautious" would have decreased stress/anxiety (IMOanyway)!
I am really careful but after all these months I am finding it harder. I want to go swimming. My mobility isnt good and swimming really helps and I have friends. I really need to socialise.My grandchildren came after school. They wear masks and go to the end of the room to sit. I want to hug them. This week I have been miserable. In the uk we arent told what treatment we will be given and I wish I could be less scared.
Today I answered the door to a parcel delivery man who wasnt wearing a mask. He expected me to sign for it. A year ago I would have panicked. Now I stew and wonder why I didnt react. Its hard to look at someone and believe they could kill me.
We get asked to family birthday partys and I want to go.
I know I sound like a spoilt brat but this is why people are having mental health issues.
This uk government has relaxed mask wearing and social distancing . They arent compulsary. Not all shop workers are wearing masks. This Christmas a lot of families will go back to normal. All the people who are dying each day arent shocking any more. There is nothing I can do about it. Sorry to moan but I cant be the only person who feels like this. Anne uk
Hi Anne. I agree with you about how the Gov seems to have forgotten us. The bluster about how fantastic it all is getting the 3rd jabs to young people which I am glad about but not sure if it stops transmission. I feel as though we have been left to fend for ourselves. If you look on the TV now you don't see many wearing face masks. I wrote to my MP about mandatory wearing of face masks. She come back with the classic Gov reply and then said that a lot of her constituent's had complained about the wearing of masks. I don't think she realises the issues for us or she doesn't care. She will not get my vote again. We just have to hope that the new drugs on the horizon comes soon. For every day of feeling stressed you should get another one feeling positive.
I am really sick of it at the moment. Everytime something comes up I get nervous because I know I shouldnt go. The government dont care how many people are dying of covid and how many are waiting hours at A&E or in the back of an ambulance.
We are told Europe are clamping down but we are as bad as Germany. I am convinced the uk want herd immunity. They are too scared to risk riots if they change things. Wearing masks and social distancing stops people thinking it is all over.
Anne, if you all are masked, go ahead and hug them! Turn your faces away from each other in the hug. It's inhaling their direct breath that is the riskiest! Do you have N95/FFP2 to wear?
Regarding the delivery person, I would have said "excuse me, you aren't wearing a mask & I am a cancer patient undergoing treatment. Please put down the package/signing device and step back, I will sign then." But my local Fedex people who need delivery signatures are all masked so I don't have to say this.
I find that putting the onus in terms of me as "a cancer patient under treatment" works well, I haven't gotten pushback. Yet. I like educating people about the fact that even though people don't "look sick" they can be immune compromised. In a store when I get crowded in line, a "please stay back, I am undergoing cancer treatment and I need to stay away from others" makes it about ME instead of THEM (i.e., an implied "you aren't doing anything wrong, it's me who needs the extra caution").
I was masking/taking precautions during influenza season since I've gotten my diagnosis. The only difference for me is, now it's year round.
But that won't help much at the community pool. Ugh. I am prepared to just accept that I will have to be the careful one/mask up moving forward.
I have got the masks thankfully. I will be prepared in future. My Husband accepted a delivery today. The person wasnt wearing a mask but put the parcel on the ground. Didnt need to sign. Attitudes in the uk have changed. I go to places that are taking precautions or I can keep my distance but it isnt as easy as it was. Delivery drivers used to put things on the doorstep, knocked on the door and used a device. The government here are not saying much apart from telling us to have vaccines.I think I have days when I worry and dont want to turn things down. Because attitudes have changed I dont know what to expect.
I cant dictate to my daughter in law how many people to invite to her teenage sons celebrations. I just cant go. I cant risk going to the cinema. There are no restrictions. I am ok today. Anne uk
You're not the only one, Anne. I feel the same. The more time passes the more fed up I get. We won't go into people's houses or have them in ours, but Winter is coming so it's not so easy to meet folk outdoors all the time.
We've put a popup gazebo in our garden, which helps.. our plastic garden furniture is now inside it.. Heaters also wired up. Better than nothing for meeting friends but it's far from normal life..
We do hug grandchildren sometimes but only outdoors and briefly.
I'm glad hubby and my best way of relaxation is going walking in countryside.. That has kept us sane.
You are so disciplined. I feel guilty that I am spoiling Bobs life. He is going to the local football matches and is fedup of me telling him to be careful.
He sold tickets but booked to go out with his family to Prince Charles estate Highgrove for a Christmas meal. We have been before. Not the big house! I can sit on the end beside him but I hope there is social distancing. I dont understand how he can be so careful most of the time. I know he is sick of all the restrictions.
I spend so much time at home and my diary has mostly medical appointments. I feel sad. Everything has gone. I used to love Christmas. I was trying to cheer myself up and make a decision about this year. My daughter will isolate and do tests and then my husband has given me a dilemma. His Mother needs a wheelchair now. She is 95. We cant get her in and out of the car. She will be on her own. Why does Christmas always cause problems?
You have gone to so much trouble. Last year we got the patio heater out. My friend did not want to come near me. She sat beside the kitchen door with the heater and I sat in the kitchen social distanced.
I am feeling sorry for myself. I realise that everyone feels the same but when you know you are immunocompromised its different. I admire your careful life. It gets harder doesnt it.
Its not so long ago we were locked down. We went to some gardens and sat outside after buying a coffee. I had disinfectant wipes in my bag. Walking back to the car people would look at each other with terror.
I should be pleased that my blood is good. Can you have remission when you take Ibrutinib? Instead I was disapointed that the haemotologist didnt tell me not to worry and if I got covid I would get the best treatment. Its strange that the majority of posts are about covid and vaccinations. We are all feeling different to other people.
I’m so sorry how hard it is for you, with family tensions and things getting more difficult with Christmas coming…
I’m really not very disciplined or careful. I’m getting less so as time passes, and increasingly sorry for myself at the same time. But I did go into a shop this morning – first time for over a year! I wanted to buy a baby congratulations card for a friend.
Much more I’d like to say in response to your heartfelt post, but tiredness is hitting as it’s gone midnight.
Maybe later we can share some practical suggestions for how to survive Christmas with CLL.
Thinking of you,
Paula in Sheffield
P. S. Like you, I am on Ibrutinib. From what I’ve heard, not many get full remission on it, though some may do. People are so variable though. I’ve been taking it for over 4 years and my ALC isn’t down to “normal” range yet.
I’m not surprised you’re uneasy about Bob (your husband I presume?) going to football matches, and you’re telling him to be careful. It must be so hard knowing he’s fed up with you saying that.
This scenario is probably being repeated with many couples who have different attitudes to Covid risk. Causes a lot of tension, and it’s much harder when one of them is immuno-compromised…
We CLLers may feel guilty at restricting other people’s lifestyles, but we have a lot more at stake than them… We are not spoilt kids who just want things our way – we didn’t choose to get CLL.
I wonder how other couples work these things out? No easy answers…
Hubby and I are ordering in a good stock of LF tests, to offer to family members we’ll be seeing over Christmas. They may have plenty of their own but we’ll make sure we have enough for them, especially for the children.
Like you, I really long to socialise again and spend time with family, especially the kids. Both our sons and their wives have been double vaccinated, but all our four grandchildren are under 8 years old, so no jabs for them yet. They all go to school or nursery – a great place to pick up bugs…
It’s great that your daughter will isolate and do tests, but I‘m not sure exactly what dilemma Bob is giving you, re his mother? Does he want her to stay with you over Christmas? Will she be happy to have LFTs done, before you meet up?
Even before Covid, I often found Christmas a stressful time. I usually enjoy it once it’s happening, but the weeks beforehand can be very fraught.. Since Covid that’s got a lot worse of course.
I do hope you work out something for you and all your family members, that you all feel comfortable with.
Hello Paula, My son is very close to his Grandmother and he has made enquiries about a taxi on Christmas day. I didnt think it was feasable but it is. He will invite her to his house. He will book it today and my Hubby will probably go over and help her into the wheelchair and take her down in the lift and presumably help her later. Thats 1 worry out of the way. Shows how old we are. My son just does everything before we have thought about it. They will cope more easily than we would and she will enjoy seeing the boys.
I do go out but make sure there is social distancing, ventillation and masks. I think its the worry and I am so sick of, knowing I am different to other people. I have ivig and luckily I havent had bugs. Other people can risk doing more. They seem to have a poorly week or thats what they think! They take the risk. Even if its daft.
Most of the time I am ok and then something triggers it. Its nice that you understand but I am sorry you feel like this too. Anne uk
Anne, it’s great that your son has arranged this with his grandmother at Christmas. Good for him! Good for her! And one less thing for you to worry about.
I know what you mean, re not wanting to be different to other people. No answers to that one.
I tell myself that there are many people who are “different” in various ways, who also face extra hazards in life. My brother-in- law became blind in middle age, a neighbour of ours developed multiple sclerosis as a young mum. Their struggles don’t take away my own problems of course, but sometimes it helps me to get another perspective on things.
As you say, most of the time we’re OK but then something else triggers it.. With Christmas coming, I suspect there will be many triggers. But hopefully we’ll have some good times over Christmas too.
I will enjoy Christmas. Its life I suppose. When I get down I feel sorry for myself.I cant be decisive and say no sorry I cant visit. I need to be quicker at saying yes or no and not keep worrying.
My husband went to see his Mum yesterday. He said she had diarrhea for 4 days. She is 96. I rang her and told her to drink plenty and to ring if she needed help. Bobs brother went this morning and said she felt better but was staying in bed. We will pop round later and get rehydration salts, get her to drink and fix some soup. I can decide what to do when I see her. Is she in bed because she is really ill? She hasnt got her mobile phone by her.
We have ourselves with issues but I cant leave these blokes to realise she is really ill.
Sorry this isnt related to cll. Its impossible to stay at home. I will use social distancing and masks etc.
There are some terrible illnesses and things will get better. I just need to be patient. We know that scientists are working on treatments. I just wanted the haematologist to tell me the hospital had the treatments. That made me insecure.
I imagine I will end up at the hospital and nobody will take any notice.
My son is kind. I would have had her here but she will like the boys. I should have enquired about taxis on Christmas day. I really thought it would be unlikely.
Take care, I have given her time to rest and will try to sort her out, Anne uk
HiI was diagnosed stage 4 high risk 12 months ago. I went straight to O and I., in remission since July. I have had covid twice once in May, ?alpha , mild just headache. Second in early October? Delta, cold like symptoms and felt a bit rough. Breathing was slightly strained on 10 but SATS OK, consultant decided to get me in hospital ASAP for redemptive antibody infusion. All sorted after a 2 day stay in hospital to monitor my Platelets. Back on acalabrutinib once out of hospital, had to stop it while in hospital as Platelets are lowered by Covid.
Hi Steve. That's encouraging for me. Don't know when I would get an infusion as I believe in the UK you have to become severely ill before going in to hospital. I keep monitoring myself but I have just been test positive 3 days ago. I feel OK at the moment but it seems to be another W& W the same as my CLL.
Hello Strech51, Just to assure you that a covid diagnosis does not always mean that you will end up in hospital or worse, I can tell you my story. I am 74, and have been taking Ibrutinib since August 2020. I have no antibodies and in fact after my covid experience was referred for monthly IgHV infusions since my gamma globulins were so low. Anyhow, even with all those negative factors I had covid last January and did not need to go to hospital. It was extremely unpleasant, and I had such a painful throat that I could not eat for 6 days and could not lie down at night, but it did not become life threatening or establish itself in the lungs. My doctor gave me an antibiotic after a week, azithromycin, which surprisingly did help. After two weeks I felt I was through it, although I still felt very weak and tired for a while.Good luck, I hope all will be all right for you.
Hi Strech51, I'm 44 years old and living in London. I am undergoing treatment for cll, with Venetoclax. I tested positive with COVID on 19 Oct, got weak gradually. I'm a patient at UCLH. I was in touch with my consultant the whole time and was told to come in as soon as my oxygen came down below usual. They told me I was eligible for Ronapreve. By day 10 I was so weak I could hardly walk. I was coughing like mad and felt my lungs were so full with phlegm. That's the day I went in hospital. But my oxygen was always above 95% throughout the whole time I was sick. Anyway you should not wait for your oxygen to be too low before you go to hospital as you cannot get Ronapreve if you are on ventilator. I went to A&E at uclh and they put me in a COVID room in the hematology ward. They did antibody test and I had none! The next day I was infused with Ronapreve and from then I was in remission. I stayed four days at hospital because they needed to monitor my reactions. I developed temperature so they gave me IV antibiotics. The first day I was able to leave home after that was 7 November (after testing negative on lateral flow) to attend my son's birthday party, but I was still quite weak. Every day after that I was getting better and better. I'm back at 90% of my capacity I would stay. Still coughing a bit and getting out of breath quickly. But honestly this treatment is amazing! I'm so grateful I had the chance to access it! I wish you good luck and don't hesitate to contact me if your symptoms get worse and want some advice or just support
My aim is not to worry you by posting this but on the contrary to say that if you get worse and don't have antibodies you will be eligible for Ronapreve and you will certainly recover well
Hi Leila. Thanks for passing on your info and I am so glad that things are on the up for you. I contacted my Haematologists secretary as I was hoping I could some Ronapreve before I became severely ill. No joy just said that Ronapreve was only for inpatients. As I am on W&W there is appears to be access to my Dr unless it is a CLL issue.. I will have to see what happens as the disease progresses. I have counted 6 days since my lateral flow positive test and other than a very minor cough on the odd occasion I am fine. I take the point about not waiting to long to shout out so will keep that in mind.
Strech51, my doctors feel a pretty severe respiratory infection(tested negative for pneumonia) (breathing was labored for about 3 days)way back in Feb. of 2020 just a month before the USA government notified us Covid had arrived, was in fact, Covid. No vaccinations were created yet. I did not go into the hospital. Stayed home from work for 2 weeks on antibiotics. Well, I was vaccinated this past March and got a mild Covid case, probably the Delta variant, in July. Symptoms were simply a low fever and some aches. No respiratory issues. I did lose taste and smell for about 4 weeks. I am in W &W. Stay confident with your doctor and eat and rest well. We can maintain healthy habits no matter what diagnoses doctors give us. Sandra🙂
Hi Sandra . Thanks for sharing this with me. I am hoping for something similar I am at day seven with just a light cough and not continuous. Keep waiting to see if it will breakout into something damaging and hoping not.
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