After being so careful for over 3years Covid finally caught me! My husband tested positive last Monday and despite keeping well away from him tested positive on Thursday. I contacted the NHS Covid helpline in the morning and had anti virals delivered to my door by 4pm.
I am still testing positive today, very faint line however don't feel ill, just a wee bit achy. The anti virals have given me a slight stomach problem but no other side effects.
If this had happened 3years ago I dread to think what my reaction might have been a) emotionally- to contracting it and b) physically- to having the virus.
The NHS has been getting a lot of criticism recently however when it works it's excellent!
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Elizabetha
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Hi Jonathon, I have been so worried about catching Covid so it's a bit of a relief to realise that things have moved on since the early days . Vaccines and anti virals seem to be working for us! Fingers crossed that the worst is behind us now 🙏
Hello. I’m sorry to hear that you have succumbed to Covid. As we are two people who have also, so far, avoided Covid, I’m so pleased to hear that you managed to get treatment easily… that is reassuring 😉
I’m guessing that you were able to test at home…? My husband’s “priority “ postal test is way out of date now!
I hope you continue to feel relatively well and recover quickly,
You can still order a free NHS lateral flow pack of tests for your husband on this government link...tick the box that says he is eligible for Covid treatmentsgov.uk/order-coronavirus-ra...
Sorry to hear you caught it Elizabeth. I am pleased you got antivirals quickly and you don't feel too bad. Wishing you a speedy recovery. Let us know how it goes
I’m very sad to hear that you have been convinced you would have been worse three years ago. 😢 I will say no more …
Also if the anti virals are irritating think about not taking them, I simply used the good old paracetamol and I happened to have a nasty dose of Covid 3 years ago.
Again we need to stop filling the pockets of the big Pharma companies by automatically assuming we all need everything they pump out.
The one great thing from this is you can now let go of the propaganda and fear and start to live your life again ❤️
Hi Lellyandme,I am still convinced things are much better than 3 years ago. My friend caught Covid at the beginning of the pandemic and was in intensive care for 3months and had to learn to walk again. She still requires oxygen at night. My friends daughter, aged 26 has been left incapacitated after catching Covid 2 years ago so don't think that that's all propaganda.
Everyone makes their own decisions however I am pleased that I had access to the anti virals and think that they made a definite impact on My speedy recovery. My husband is still testing positive and not recovered while I am back to normal.
I personally just see that all that very differently. It’s not that straight forward although the powers that be have sold it that way. There are alternative thoughts on this and we should all think outside the narrative.
Just because your husband is not getting better without anti virals will not mean he will get better with them and if he does it could merely be coincidence !
Your friends and other people who were very unwell three years ago could still very well be equally as ill if they caught Covid this winter.
The Science is that now… not three years ago we know exactly how to treat it. We did not have the SCIENCE in the beginning. Fact vs opinions aren’t the same.
I am an RN and worked in the COVID unit during those 3 years you reference as propaganda. In my 40+ years as a nurse, I've never seen anything like it. You can see it as "differently" as you want, but maybe keep your opinions to yourself when someone has a post expressing THEIR opinions. No disrespect intended.
In the area of the nursing home where my Mum lived 9 out of 10 people died. The carers were traumatised watching them die.Vaccinations are the answer. Thats how we elimated terrible diseases in the past.
Many of us are immunosuppressed. I was told I might die by a consultant. I wont take any risks. Anne uk
Oh dear, do you realise that many in the medical field would not touch the vaccination.
Before anybody comes at me, it was from the mouth of a medic, and no unfortunately I do not have some so called baffle me with B/S piece of work to try to back that up. Take my word or don’t !
As my co-administrator, AussieNeil explained earlier, we aim to provide an evidence based approach to living with CLL.
A study published last month on the Jama Network found that some doctors have been engaged in spreading misinformation "about vaccines, treatments, and masks on large social media and other online platforms and that many had a wide reach based on number of followers". This means that there is a need to look at the evidence of such statements, not just accept them at face value.
The International Blood Cancer Consortium's latest Patient Impact Statement, "endorsed by more than 70 researchers, clinicians, patient organisations and medical societies", makes it clear that those with a blood cancer, particularly those with CLL, who are at a higher risk from infection should continue to take all precautions to limit their risk. It also states that "Everyone, regardless of their immune status, should be vaccinated. The more people are vaccinated, including booster vaccine doses, the more the IC/IS [immunocompromised/immunosuppressed] are protected."
Thank you for providing research evidence rather than anecdotal stories. Peer reviewed research is important in helping to learn from the past and plan for the future.
Doctors spreading misinformation …oh yes that belief would back up my theory that this site is bias.
Honestly…people of this please wake wake up and look at it “ALL” there is the bigger picture out there ..but the moderators can’t seem to find those “evidences” or those “evidences “ don’t suit the narrative for this site !
Thank you for your post and honesty. Everyone should be heard. There is too much propaganda and canceling going on. Antivirals were not readily available years ago. Am glad they worked and covid variant is less. Thanks again for posting.
Absurd !! ... big pharma and small pharma has saved my life and many others on this page on treatment. You can refuse treatment but stop spreading slogans....
If you read my post at no time did I say avoid everything …what I said was to stop taking their word for the gospel and chewing on things that you can do without … dear lord your the pharmas dream, but up to you !
Lellyandme, this community endeavours to provide an evidence based approach to living with CLL. So it's not that "we need to stop filling the pockets of the big Pharma companies by automatically assuming we all need everything they pump out", but unfortunately accept that because the science is clear that people with CLL are immune compromised, the sensible approach is to accept that we are likely to be at more risk from COVID-19 than the general community until it is otherwise determined. So it makes sense to take extra precautions to reduce our risk of infection (masks, vaccinations, etc) and appreciate that we may need further medical interventions to reduce the severity of a COVID-19 infection. Indeed, over the past 3+ years, studies have unfortunately consistently shown that people with haematological cancers - that's us, are indeed at a higher risk of dying from COVID-19 than the general population including those with solid cancers.
Lots of "big Pharma" prior interventions have lost their effectiveness with the newer variants, (e.g. monoclonal antibodies, most antivirals, early vaccine formulations), but well fitted N95/FFP2 masks still work. The Paxlovid antiviral can still be a life saver if given early enough.
Just in are two studies published in the Journal of the American Medical Association (JAMA), that specifically looked at how people with cancer fared with COVID-19 infections (including those with lymphoma - that's us) compared to the general population. Importantly, it reaffirms how we need to research the impact of COVID infections on us - not the general population, because while the news was good for the general population, it was bad for us!
(1) Deaths Due to COVID-19 in Patients With Cancer During Different Waves of the Pandemic in the US (31 August 2023)
Findings Among 34 350 patients with cancer who died during the COVID-19 pandemic during periods in which wild-type, Delta, and Omicron variants were predominant between March 2020 and May 2022, the number of deaths was higher during the winter Omicron surge compared with the preceding year’s winter surge of the wild-type variant. In contrast, there were 29% fewer COVID-19 deaths in the general population during the winter Omicron surge compared with the preceding year’s winter surge.
Meaning Findings of this study suggest that patients with cancer experienced a disparate burden of COVID-19 mortality during the winter Omicron wave; strategies to prevent COVID-19 transmission should remain a high priority as new variants arise.
(2) SARS-CoV-2 Infection, Hospitalization, and Mortality in Adults With and Without Cancer (31 August 2023)
This was a big study of more than 11 million Ontario residents, including "279 287 individuals with cancer, including 245 386 individuals with solid tumors (mean [SD] age, 62.5 [16.1] years; 144 480 [58.9%] female) and 33 901 individuals with hematologic malignant neoplasms (mean [SD] age, 65.9 [16.0] years;" (Supplement 1 provides a fairly thorough breakdown of the studied population by vaccination status, disease, etc.)
Snips from the study:-
"Compared with the noncancer population, individuals with hematologic malignant neoplasms had approximately 19% greater risk of SARS-CoV-2 infection, while individuals with solid tumors has approximately 7% lower risk." (My emphasis)
"Following hospitalization, 28-day mortality after SARS-CoV-2 infection was significant higher in patients with hematologic malignant neoplasms (50.7%) and solid tumors (45.8%). This critical finding demonstrates that all efforts must be made to prevent SARS-CoV-2 infection and decrease the hospitalization rate in individuals with cancer and SARS-CoV-2 infection." (again, my emphasis)
"The risk associated with SARS-CoV-2 infection and COVID-19–related outcomes, including mortality, decreased in a stepwise manner with increasing numbers of COVID-19 vaccine doses."
Thanks, From the ASCO® 2023 Insights: "Results of A041702, an Alliance Phase 3 Study of IVO vs. IO for Previously Untreated Older Patients With CLL and Impact of COVID-19"
By Insights from 2023 ASCO® Annual Meeting FEATURING Jennifer Woyach.
Grade 5 adverse event = patient death.
Neil
Grade 3-5 COVID-19 adverse events experienced by 7% of IO patients and 13% of IVO patients
as I have said before, you do not actually know the efficacies of the studies you are quoting… who is taking bungs for false information or whatever sad, crooked stuff that goes on in this world. It could just be more propaganda.
We need to use common sense and stop spreading the narrative that makes this site way too pro vax, pro drugs and all the other good things we are brainwashed into seeing and hearing.
Again I repeat, there is no balance here… my speculations have no less authenticity to them than the stream of reports that you insist are credible or has some so called “reputable” name attached it.
You are welcome to buy that narrative but equally don’t stifle me from my opinion.
So we are to "Take (your) word or don’t!" about one medic's opinion and your mention of "many in the medical field (who) would not touch the vaccination", who presumably don't have CLL. Likewise we should accept that your "speculations have no less authenticity" than the peer reviewed studies I have referenced? Fortunately, science relies on people testing their opinions through reading other studies, then developing and testing speculations (hypotheses), which expand our knowledge.
CLL is a very heterogeneous illness; so while some of us might get away with perhaps even asymptomatic COVID-19, perhaps even without vaccinations/boosters, at the other extreme, some of us can die. COVID-19 looks to have about four times the fatality rate of flu for the general population.
With respect to your opinion being stifled, currently 10 of the 42 replies to this post are from you, way more than anyone else.
My co-admin has shared about COVID-19 misinformation in this recent reply to you healthunlocked.com/cllsuppo... AsCLLerinOz said,
"This means that there is a need to look at the evidence of such statements, not just accept them at face value." If you want your opinion taken seriously, please provide some references, so members can look into them and make up their own minds.
How effective are the anti viras please? I tested positive today for the first time .I had a reaction to obinutuzumab, is paxlovid from the same family?
Anything ending in 'mab' is a monoclonal antibody, which locks onto something, marking it for destruction by our immune system. Reactions to obinutuzumab are not uncommon, particularly the first infusion. (Happened to me). Having a subsequent infusion reaction to obinutuzumab is much less common.
Antivirals work in a different way to monoclonal antibodies. They work by blocking the replication of the DNA or RNA of the targeted virus. Paxlovid continues to work well in this regard, even with the new variants in circulation. Unfortunately it commonly interacts with other drugs, so that you might have to stop taking another prescribed medication or at least reducing the dose while you are taking Paxlovid. The other antivirals have become less effective against the newer variants and only a few are still used.
AussieNeil, thank you for reminding us of the evidence and robust research indicating the impact of the vaccines and anti virals. It's too easy for people to forget how awful Covid was and how many died.
I am getting quite scared of the voice of those who are claiming that Covid was no worse than the flu. That voice seems to be getting louder and unfortunately some people are beginning to believe in some big hoax and master plan to poison the masses.
Unfortunately it can prove very difficult to change the minds of those who prefer to believe in conspiracy theories!
I am alive .........that´s all that matters. I refused to take Hydrea some time ago and chose phlebotomies instead ....but you didn´t know that, right?
So sorry that it got you - our entire family had the same experience two weeks ago courtesy a friend flying in from Canada - despite social distancing in the garden - and her insistence on hugging got us! The NHS was really helpful and responsive for us too - I had Paxlovid in my sweaty hand within four hours (from a pharmacy).
We are slowly working through the debilitating tiredness and relentless coughing (and suggestions on how to reduce this in our collective wisdom?) ...
The real concern is that we cannot get Paxlovid for when we want to travel, so visiting other countries seems like a challenge.
Great to hear you had a mild case. I got Covid last week and only felt mildly bad for one day. I was back to normal in 3 days without any treatment. So hopefully this means that these new variations are getting weaker. I also have only had a single Pfizer shot back in April 2021. It’s certainly a relief that it isn’t as severe as it once was. I wish you a very speedy full recovery. Kvb-texas
I'd prefer it if the 1% that weren't manageable had been "manageable", instead of filling hospital ICUs. No country has a health care system that can cope with that. It's still around, still mutating and the next mutation may be just as unmanageable as the first.
I'd prefer that it didn't kill so many of the over 80's, cleaning out care homes and retirement villages.
I'd really really prefer that it hadn't killed so many with CLL.
Think of it like a practice run for next time. When we had a fire drill at work we always had a 2nd one a few weeks later because so many people had done it wrong, like walking past fire escapes to exit by the front door. If we didn't get the 2nd one right there would be a 3rd, seemed like that one was always in the rain. 4 people in front of me walked past the fire exit I opened, they had cameras on the exits and those people got a 1 to 1. Nearly every country failed this practice run. The next one and make no mistake there will be a next one, this was SARS-2, may have the death rate of MERS-1 with the 2 week stealth of COVID, then half the world dies. With the globalisation of the world, potential pandemics are more frequent and faster spreading. Before vaccination in the 1950's , TB and Polio were rife. There were repeated flu epidemics in the 1960's and 70's. 2003 SARS-1, 2012 MERS, 2019 SARS-2, might get to 2030 before the next one but 2040? not a cat in hells chance.
I think everyone would prefer that. At the same time, I would also prefer if our institutions were always honest with us and never mislead. They should never do that…. ever…. even if they feel it is for the greater good. Lellyandme is right about it being manageable for the vast majority…. certainly no denying that. It’s ok to say that because it is true. It’s also ok to highlight the really vulnerable comorbidities and take the appropriate actions if you fall into a high risk group, like us. You are 100% right about there being high risks of future pandemics. That is why we need absolute candor and honesty in our institutions. They need to get it right the next time.
Awe, glad to see you are feeling better. Definitely you are a lot better off for having gotten it now as opposed to 3 years ago. Here's to a swift complete recovery.
Hi, like you my wife and I have managed to dodge Covid until last weekend (I have CLL). I tested positive Monday morning; called my surgery as advised to do so on the CLL support website -- clueless, didn't know what to do and told me to call 111 - not much better. Registered my test result on 119 as advised to do so by my CLL consultant. Finally got a call back late afternoon from a very helpful nurse on 111 who agreed (as had everyone) that I was eligible for the anti-viral treatment although she didn't know where or how I would get this.....bless her, she persevered and got a number for the CMDU at Northampton Hospital who called me and arranged for me to have a Sotrovimab infusion yesterday (Tuesday) afternoon. Please note - CLL support say that all CMDU have closed, not so and not helpful. Anyways, already feeling much better and hopefully the improvement will continue over the next 48/72 hours. Quick question - when you say the Covid helpline, which number is that? And where were the meds delivered from - might be helpful for others to know - sorry if that has already been covered in the thread. As an aside, agree with your thoughts about 3 years ago, and out of interest so did the nurses at the CMDU - the current strain is affecting the upper respiratory system and therefore less need for ventilating machines.
Hi Tony, I live in Scotland and each region has a special helpline number which is listed on NHS Scotland. I initially phoned the number for Greater Glasgow and my details were taken. I was then contacted by a nurse specialist who determined that I was eligible for the anti virals. She informed me that I would be phoned by an on call pharmacist to check which anti viral was suitable based on my medication. The pharmacist who called was very knowledgeable and prescribed Molnupiravir as I am taking Venetoclax, which prevents me from taking other anti virals due to contraindications. She emailed the prescription to the on call pharmacy who then delivered the medication to my house. I don't know if the system is similar in other parts of the UK however I was so impressed with the efficient system in Scotland.
I hope that you make a speedy recovery. Unfortunately I have been left with a hacking cough and a pain in my chest. I think I now need to see my GP just in case I have an infection.
Interesting - both my wife and I are feeling much better other than a hacking cough!! I'll see how I feel come Monday, might be a call to the surgery. We're off to Brittany end of next week so hoping (fingers crossed) we're both in the clear then.
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Both me and my husband ( CLL) have Covid
Covid 
