Three weeks ago I got covid after two years of precautions. Still not sure how I caught it, but the NHS did work well for me and I received a sotrovimab infusion within the first three days. Because I also have heart problems they couldn't give me paxlovid. My recovery was rapid, symptoms eased quickly and although I still have an occasional light cough, nothing else. My LFTs were negative within a week.
We haven't really ventured out much since March 2020 and certainly no holidays. I do feel a burden on my wife who has had to maintain our seclusion with me. We miss our trips overseas.
My daughter's family is off to St Lucia in June and want us to join them. The St Lucia health provisions don't in any way match the UK's and although I responded well to my antibody infusion I don't know how good my fully vaccinated, soon to be 5th boostered immune system is really working.
If we were getting Evusheld I would be much more confident. At the hotel which we have visited before, we will mostly be outdoors eating and keeping distance won't be a problem.
I am worried about:
**the airport,
**the 8 hour plane journey now that mask regulations have gone and
**the available treatment if I did catch covid again.
The cost of treatment not so worrisome because of good travel insurance but the quality and availability is.
Any opinions or experience out there?
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Harvist
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Can you get the input of your doctor? A doctor’s input is always beneficial. It would be helpful to have an antibody test to see how you responded to the vaccines but unfortunately that doesn’t seem possible in the UK. If it were me I’d go but it is a personal decision. I have been attending meetings and the occasional dinner, store, etc. The biggest concern I have in the scenario you describe is being away from my healthcare support system, Covid or no Covid. But as noted above I’d go on the trip as at some point you need to start living.
Hi Mark, I'm in the UK and of course we can get tested here for covid vaccine response. Some might get their doctor to do this. But the majority have to pay . I'm thinking of doing this before deciding on a 5th vaccine.
I think it was Newdawn who detailed name of recommended company.
That is good to know. Thank you. My recommendation to Harvist would be to get tested for his vaccine response. Since he hasn’t been treated for CLL it is reasonable to expect that he had a response. Knowing his response would be an important piece of information for making a travel decision.
Hi Harvist, I have no idea what the medical treatment is if one gets Covid there. However, if good comprehensive insurance is no problem for you, and you decide to go, then just make sure you have got insurance that covers you for quick air ambulance evacuation if you get Covid. I'd guess the insurance terms would mean you'd have to have an accepted PCR or lateral flow test .. ?? This needs serious research and being sure of your cover. I would not fly without it and just guess I'd find it too expensive, but for heavens sake, do this if you can.
Also would an air ambulance take you to Miami only or to your home country? Frankly if I needed treatment for Covid, I'd prefer the nearest country rather than a trans Atlantic flight. Florida is full of top clinics. Cleveland Clinic is an excellent one.. they just opened in London so might be worth asking them if their Florida office has info on all this. Another thing I'd check on is whether St. Lucia, with its tourism industry has a clinic with quickly available Covid testing and monoclonal antibodies and antivirals available if wanted there.
For myself, I'd not go. I'm just too anxious about this risk. But I've seen others operate differently and their lives are happier. It's not the risk from being in a lovely resort with fresh air and sun, its the darn airport in UK and the plane.
There is a substantial difference between his position and your position in that you are on active treatment and he has never been treated. Acalabrutinib suppress the immune system and usually limits the effectiveness of the vaccine. He is earlier in in the natural history of the disease so probably with a stronger immune system and in a better position to travel. As mentioned, confirmation of vaccine response would be helpful. If I were you I’d be more hesitant to travel without something like Evushld. Of course these are generalizations and the advice of a doctor is what is needed before making decisions.
Hi Mark, I've had to come off my Acalabrutinib, and in two or three months they'll see if I can go on again. Sorry that was not on my profile. Due side effects that cannot be treated while on the Acalabrutinib. Stomach issues. Been off about 3 weeks. Don't know where that puts me. Anxious that's for sure. Though my specialist says my bloods are so good that he's happy for me to be out of treatment fot that period. But you know Mark, I think that a lot of the advice and also decisions about life style in these Covid times, come down to the type of person one is. I don't even feel its fair to ask any Medic if I should do this or that. Who knows, really? Am I really doing the best to cower from risk of Covid. All I know is that it's what I feel the need to do. But it would not surprise me if it resulted in my immune system not being as robust as possible.
I agree. We all see risk differently. In my case I have two teenage children that are in school and playing sports, etc so there is no hiding away. I feel fortunate to have gotten a good vaccine response so I am hopeful I will remain protected. It is complicated and there no easy answers.
The company Newdawn used to test for antibodies and I’ve also used 4 times is Monitor My Health. It’s run by the NHS and I think is a good service; cost was £39 and it tests for antibodies from the vaccine and separately for those due to the virus. It gives you a numerical value and is a quick turnaround.
I’m too scared to go anywhere (even to the hospital for bloods) so I’m no use in helping with your dilemma I’m afraid .
Even these tests are not 100% and no one knows what is a good number.We having CLL is enough even if only just diagnosed to be vulnerable compared to the general population.
I had my fifth booster jab last Sunday and wondering whether it'll have produced any antibodies as previous vaccinations haven't produced any antibodies from the tests I've had through viruswatch survey I've been taking part in (I've had two tests)
Also I've taken part in another ongoing annual survey with living in Britain for the last few decades, they been doing a separate one on covid this last two years and I've had two tests with these, still not producing any antibodies.
I've done at least one test with NHS having had them sent out randomly throughout the UK this last two years.
I do also have other autoimmune disorders and have previously been treated with FCR for CLL.
NHS won't do operations on me apart from via A&E route due to my comorbidities.
So I've been suffering two totally ruptured rotator cuffs since 2019. Gallstones since 2018 and also incisional hernia since last bowel operation in 2013.
Now dealing with prostate cancer where they won't remove prostate or do radiotherapy due to my many bowel operations over the years and only looking at brachytherapy as a possible option.
Just had a second MRI scan which shows I now need another biopsy asap after the MDT meeting a few weeks ago.
I'd love to travel again, even in the UK but my health is really not good and I struggle daily at home.
We still have all shopping purchased online and only venture inside buildings for GP or hospital where a telephone consultation won't suffice.
We miss our families which are spread far apart here and abroad.
All the family members go about there daily life everywhere and think because they've been vaccinated they won't get covid and none of them have ever suffered any serious health issues.
Only you can decide how and when you want to travel etc, weighing up risks.
I also have other autoimmune conditions and during the pandemic, in 2020 had to have major emergency surgery, leading to me being in ICU on a ventilator. After almost 2 weeks in hospital, still trying to avoid Covid, I discharged myself as I was so unsafe there and highly vulnerable.
I only took the antibody tests for my own interest, just to see if the vaccines had any effect - I’ve had my 2nd booster ie., 5th jab, though not tested yet since that one as it was only about 3 weeks ago. Some vaccinations did produce some antibodies and some didn’t. I have a few (not many) but it doesn’t make any difference to how I live and I’m no less fearful. I’m more afraid as restrictions have been lifted and knowing that people are out there in huge numbers with Covid but without masks makes it worse. Knowing they’re all enjoying meeting up with friends and family, going out for meals, to the cinema, concerts, exhibitions, socialising and going on holidays... shopping... is torture as I can’t.
I’ve not been into a shop for over 2 years and I’m fed up with online shopping. But my fear of catching Covid overrides all the things I miss doing and all the people I miss seeing. Knowing I can’t be sure I’ll access therapeutics makes it harder and knowing there’s a preventative being used elsewhere but not in the UK (I doubt we’ll ever have Evusheld here) also rubs in the inequality, unfairness and lack of caring about the vulnerable here.
Ultimately, we all have to make our own judgement about personal level of the risk we’re prepared to take. My threshold is very low and getting lower as time goes on. ‘Normal’ life looks impossible and I can’t see this changing any time soon. I wish I could but as they say ‘it is what it is’ and I am what I am - a shadow of who I used to be.
I'm with you Sparkler still living like a hermit, friends and some family visit but only after doing a LFT. I have been invited to a family do at a pub before my friend flies back to Australia but having kept safe for so long I don't feel able to take the risk. Stay well
Thank you, Bub. I didn’t mean to get on a poor me roll but I’m finding it harder with the sunshine and Easter break. My adult son and daughter and her 2 little kids (5 & 3 yrs) are almost 200 miles away and I’ve now missed 3 of my kids’ birthdays. It was a big one for my daughter the other day too. I don’t drive and whereas normally I could jump on a train that’s not an option now.
I think if I’d caught Covid already and recovered, this wouldn’t feel quite so scary but like you, having avoided it for so long I feel more determined now not to catch it. My 2 CNSs (they share the load) are very kind and try to reassure me but nothing they say helps. They do make me feel hopeful but once the call’s ended I feel just as bad as before. One of them has just been off work for 3 weeks as she caught it and she said she felt awful.
My CLL Cons caught it just as I transferred to his list at the beginning of the pandemic, (as I’d moved) and he ended up in ICU. His advice to me was ‘don’t catch it’! I’ve never met him and nobody’s examined me for 3 years. I don’t think I’m Stage A any more either after 12 years of W&W, as I do have some B symptoms. I have a phone consult on Wednesday but was too scared to go to the hospital for bloods especially as I didn’t want to catch the virus over the Easter holidays, as the people I’d need to contact might not be available or if the CMDU would be open. The stress of accessing the antivirals/Mabs is bad enough and I’m not even sure I could cope with that. So I’m not feeling very confident about avoiding it and have convinced myself that if I went out amongst people I would catch it.
I can certainly understand why you wouldn’t want to meet up with family in a pub even though your friend flies back to Australia. I’m genuinely sorry you feel the same as me but it does help to know I’m not alone with these feelings of dread/paranoia and although I don’t think I’m being over dramatic, there are times when I know others think I am. None of us know how we’d react to Covid or if we’d get the therapeutics we need, or even if they’d work and I want to stay alive.
Hi Sparkler and Bubnojay . It’s awful isn’t it. Work and child care have forced me back out for which I am both worried and grateful in equal measures.Peggy
I am also on watch and wait with relatively low lymph and WBC counts. I have done 2 trips to the USA and was stuck in the USA at the beginning of the pandemic. When I travelled there was a requirement to have a negative COVID test before flying. I also upgraded to business class. No I'll effects from flying A greater problem is crowds in airports particularly at immigration and security
We all are different both in terms of attitude to risk and stage in our CLL. I am also on W&W (A0). Got my antibodies tested by Monitor My Health for £39 and antibody levels look good. Since last summer I’ve been pretty much back to normal (plus mask of course) . We are UK based and have been abroad 3 times (to Europe) both by plane and driving. We have several trips planned this year. If I was you I’d get a test and enjoy the holiday!
Alan, as you have had Covid and almost certainly made some antibodies as a result I would (with fly me to the US travel insurance) probably go. Also as you are still on W&W (I believe), the vaccines have probably been at least a bit effective.
How much do you want to go away with your daughter? would you be relaxed so far away from the UK, ie will it be a holiday for you? will there be other opportunities to spend time with her and her family when Covid isn't such a threat, you said you've been before, no doubt you will go again, sometime if not this year?
For the past few years we have been away with our sons' families and the grandchildren Feb /March time to the Canary Islands; this year they went without us, same issues, the airport, the plane. But I am on my fourth round of treatment, I know I have no antibodies from the vaccine, or much of an immune system for that matter, so our circumstance is a bit different.
Reading through this post I recognise I've been of no help, just empathising with your quandary. Whatever you decide, I hope you have a nice summer, weather-wise so far so good.
If I were in your position exactly, I would go. Wear a K-95 mask in the airport, on the plane and anytime you are in a crowd. Take plenty of hand sanitizer and put a supply of Clorox wipes in a plastic bag to wipe down arm rests, tray tables and seat back adjusters. I think you can also buy them in small packets for travel. Take disposable gloves for times when you encounter restrooms or other spots that might not be as clean as you would like.
When traveling, even before COVID, I would wear a pair of disposable gloves from the time I got off the plane until I got to my personal rental car or my hotel room. Shuttles, cabs, and other public transportation cannot be thoroughly cleaned as often as would be necessary to assure on germs are left behind.
Try to board the plane early, or last to avoid the boarding crowd up. If possible get off the plane after everyone else does to again avoid the crowd up. Be cautious at the baggage carrousel as well, and anytime waiting in lines. Be sure and save some Clorox wipes for the trip home. Enjoy the time with your family. BeckyL USA
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A thought for the new year
Happy New Year and Warts
Father of two, cll diagnosed three years ago and the unknown
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