I agree @Chapsticks - you have to do what’s best and right for you to keep yourself and your son safe.
I don’t know how I ever lived without home deliveries!!! 
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Hi @Chrispy a great big welcome and it does not matter how you respond on here, it is just great to hear from you and interesting to hear your experiences about actually getting the 3rd vaccine and your antibody test.
It’s all so confusing isn’t it.
How are you doing apart from these confusing’s?
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I really agree with everything you say @Chapsticks and perhaps we all need to be comfortable and feel safe with the decisions we make in our own situations.
It must be very difficult for you being a sole parent and carer of your son and as you say thank goodness for home deliveries, zoom, skype and garden visits.
How have you been over the last 18 mths?
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Hi Chrispy
At least we have both had a positive response, however weak it may be and it seems nobody will enlighten us. My results are units per millilitres. The unit is an arbitrary unit agreed by scientists so I assume it will be an agreed number of antibodies, maybe. The unit value is a 1000 of whatever they are. Your test measures something different and I can’t find the value of the unit.
The company I used claims to be not for profit which is why I used it. The proliferation of tests and providers and a lack of standardisation strongly indicates profiteering to me. We have a national health service that can and should be allowed to do the job properly. Outsourcing companies are always greedy, callous and ultimately incompetent, but they do make a lot of money for a few very wealthy people.
Very good luck for the future and “let’s be careful ou there people.”
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I did ask a consultant the booster question and was told to go ahead and have it when it is offered. I will however continue to shield as much as possible, eat outside when we go to the pub, avoid crowds, shop online and only meet with trusted friends. Wear masks and gel hands. I don’t see it ending any time in the near future. It cannot end until the whole world has been vaccinated and gotten herd immunity. NZ tried quarantine and it hasn’t worked now covid is spreading like wildfire and people who wouldn’t get vaccinated are rushing for the jab. It is a very personal choice but being a pragmatist I will do what I can in the hope that I can avoid covid and should I catch it alleviate some of the effects.
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Hi Lance. There do seem to be a number of different units and when i googled it i couldn’t find mine at all. The result was put on my record with no context so it was only when i finally got a response from my haematologist that i understood it. But yes it is good to at least know i produced some anti bodies so have some protection I hope.
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Hi Erica. It is nice to hear from people in the same situation as me.
I was diagnosed with CML in 2003 and have most of the decease under control with medication. A few years ago my platelet count started rising but despite every test under the sun there is no reason for this so it worries me but i have been told it is not a big problem.
I shielded from the start and still keep away from people where possible. I haven’t been on public transport or inside a coffee shop etc since lockdown started. I have been lucky that my gym has kept up safety restrictions so i have still been able to go there. Everything spaced wide apart, fresh air and lots of sanitizer. I go a bit OTT with cleaning down the machines before and after i use them as well as weights etc. I just hope they keep everything up as it is social as well.
I have a few friends that understand my need for meetings to be outside and have refused any social gatherings i think are a risk. I still spend most of my time walking on the grass verges or the road as i no longer even hope someone will give space.
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hi @ilivesunshine . I did do a cruise too but i didn’t go the concerts i booked tickets for. The cruise was covid safe and felt like normal life with a few precautions. Everyone double jabbed, lateral flow before allowed to board, masks inside while moving around, distancing in theatres etc and small bubble of 6 people so sit with no need for masks or space ie dinner companions. Had to wear a tracker too which would alert if anyone did test positive and who they had contact with.
Hope you enjoyed your cruise.
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Best to have it although at the moment the coronavirus seems to be about as potent as the common cold but it could mutate again back to the hard hitting variety of a year ago.It media say that people with lymphoma and leukemia will be offered it as their immune systems are comprised by these two types of cancer.They type of lymphoma that I have, Mycosis Fungoidies,has caused skin infections but nothing of the lungs,etc,but I understand it can if the Mycosis Fungoidies infiltrate occurs in the mouth.Luckily mouth infiltration is rare because it’s usually rapidly fatal!
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As a giggle I thought I would say I will have had 5
Two from before chemo and stem cell, which have been completely zapped along with all other vaccinations in the procedure; so I will have the other 3 once my immune system starts to respond to vaccinations (prob day 100 onwards).
I want a trophy! 
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You definitely deserve a trophy!!! The best I could do on a Monday morning 
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As most of you will be aware that once you have high dose chemo , all immunisations from birth will need to redone. This includes any Covid vaccines one may have had . I am sure reintroduction of childhood vaccines in these stem cell circumstances have been managed with a degree of knowing and expertise over the years, but I am concerned about the ‘unknowns’ as they relate to the Covid jabs ie having those again.
My daughter 21yrs has had two and has had some new symptoms (ear ache and pain in her chest) which she hadn’t had before . We both took the jabs in good faith and on advice. She is loathe to have a third . I know it will not be an easy decision for individuals and I also know many people (including my siblings) who have both jabs with no issue.
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I don’t think anything is OTT; you have to do what makes you feel comfortable. I remember at the end of Feb last year, when there were only a handful of cases in this country, we were due to go to the theatre for my birthday … a very small place with a meal served beforehand. I woke up one morning and told my husband to cancel because it just didn’t feel safe - and he thought I was completely bonkers 
. He cancelled it though - and I’m so glad we did because 3 weeks later we were going into lockdown! So do whatever makes you feel safe; true friends will understand - and if they don’t they’re not really friends. Keep safe x
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Yes, @Mayo57,you are so right, there are so many unknowns, and even differing medical opinions.
I can really understand your daughters concerns too.
We all have to do what we are comfortable with.
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@Erica - I’m very lucky in a number of regards - that my son was already being home educated (he had to be as he couldn’t manage school past age 12, but it means he hasn’t had to go through all the disruption to routine etc), that he and I get on really well, that I work from home, that we’re both introverts anyway & understand each other’s need for space and are also good at keeping ourselves occupied. I also have a little garden, which is a blessing for getting us both outside, and a treadmill, internet, books etc, lots of resources! But you’re right it’s difficult too! The fact I am ALL my son has causes me a LOT of worries - bcos of the ASD he struggles with people (and/or they with him, even though he’s a lovely soul) and he isn’t really able to look after himself on a day-to-day level, so I’m very worried what would happen to him and feel like I HAVE to stay alive and reasonably well for his sake! Obviously I very much want to as well!! Anyway, with Covid being as bad as it is for folks in our boat (as in people with blood cancers), I end up with a lot of anxiety around contracting it should he or I need face-to-face medical or dental treatment (as otherwise we just stay home) and this creates a fear for his future which seems to tick along beneath everything. That’s FAR & away the biggest challenge for me of the whole thing and at times it can be very lonely, very intense and with hooks that reach into a lot of different places. The rest (all the staying home etc) I feel I manage reasonably well, usually by getting creative and/or trying to look at the positives 
! I’m sure if this had happened twenty years ago when there was no decent internet, I’d be finding those aspects much harder - as it is, it’s communication, deliveries, entertainment, work, education, and so much more. Anyway, that’s a bit of a long answer, you’re probably sorry you asked lol! I hope you’ve been ok over the last 18 months too!!
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Hi @ I am very glad that you felt that you could be so honest on our forum and I really appreciate you taking the time to respond so comprehensively.
I bet the fact that you have ALL and your son causes you a lot of worries, that is so natural.
It certainly cannot be easy for you and as you show the benefits of the internet are actually really helping you in so many ways.
Your son and you seem in such a good routine and your close bond really shines out of your post.
Your little garden must be such a bonus too.
You have us on our forum to support you now as well.
I have been shielding over the last 18mths and I am also in a good routine here, I love my home and I am happier on a one to one basis than in large groups, but am I too comfortable here? what is the realistic risk of Covid out there? the questions go on and on.
Look after yourselves, spoil yourselves and we are always here for you.
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It is tricky isn’t it as everyone has said. Many of the CML people on CML forum seem to think we wont get the 3rd jab until they give it to all the over 65s or over 50s or whatever, if they ever do, as they argue our immune systems are not significantly suppressed by the TKIs we take but on the other hand some of us CMLers have had the antibody test and the results are not good so it is confusing. On balance I think I would like the opportunity to have the booster to feel safer although I only work part time now and I would like to do more socially but people in general seem more careless than they were and it is unnerving to find yourself in a meeting or a seminar with someone awaiting test results who would previously have had to isolate.
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Excellent thread, thanks @Erica for starting it. Getting a 3rd jab is obviously recommended, but unforunatly if you already have compromised immunity it will not mean that you are suddenly fully protected from covid, it will just reduce slightly your chances of contracting it. And if you did get it, it would slightly reduce your chances of getting seriously ill. At least that is what the early data suggests but they are still learning. I think it is clear it will help, but just how much is not clear, so best still to be careful if your immunity is compromised. Just how much your immunity is compromised depends upon so many factors, so there are massive differences between individuals. The main factors are: Type of blood cancer, whether currently on treatment, whether you have antibodies. But remember also that having no antibodies is only another indicator, it is not a ‘yes’ ‘no’ sign that you have immunity to covid. For example, you might still have good immunity if you produce a good t cell response. It is just another indicator that you are less likely to have a good response. So everything you do is all about reducing your chances of getting covid, so therefore anything that does this is good thing, therefore the booster should be seen as a chance to make things a little better.
As a CLL patient on treatment, and with no antibodies after the first 2, (Both higher risk factors) I am certainly in the high risk category (I tick all the boxes!) I am more interested in the Provent trial for a treatment with monoclonal antibodies (Basically manufactured antibodies). This has potential to give as good a response as healthy people have to the vaccinations.
I agree also with those who said we need to get back to a normal life whenever we can. I just took a chance by taking part in the Leeds 10K last Sunday, which had thousands of runners. For me it was the first step in getting back to ‘normal life’ after 20 months self isolating. But I calculated as long I took precautions it would be far less risk than, for example, going into a crowded place indoors. I hope I am correct, I have not done the covid test yet, but I am certainly feeling well!
I feel like I am a one person clinical study of how safe mass participation events are for CLL patients on treatment - perhaps not a big enough sample. If I have negative covid test, 2nd stage of the ‘experiment’ will be Great North Run next Sunday, but only 57,000 people do that so it should be fine 
(cough). (I will do the test tomorrow, and let you know how it goes).
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