@Murdoch I never thought about withdrawing from society till Covid times hit, I then isolated, apart from my morning walk for about 3 yrs.
I then decided that I needed to get some natural immunity from out there.
I was struck when I heard that nobody had ever tested to see if the flu vaccine gave any protection at all for the severely vulnerable.
I was fully Covid vaccinated ( although I did not know how effective the vaccines had been) so I started to go out carefully.
I have been on busy buses and been out for the odd meal, but not gone to the cinema or theatre, just because I have not felt the need. If I did I would book seats at the end of the row.
I don’t hug friends now, but I do go for a coffee.
I look at it as I choose to make some changes to my lifestyle and not that I have to because I have Chronic lymphocytic leukaemia (CLL). It just changes the thought process.
I am far more emotional now than I was before my diagnosis, it was the shock of life changing news.
You are doing brilliantly and take care
Thanks Erica. Lots of parallels there. Much the same for me. I really appreciate hearing this. You’re the first fellow-sufferer I’ve ever communicated with and so it’s comforting to realise that you have had similar personal feelings, responses and experiences and have done so for 19 years. Well done you, keep it up and, above all, thanks.
On the more technical side, I read somewhere that the level of neutrophils in blood tells a lot about a person’s susceptibility to infection. Is that right?
I enjoyed your post Erica, you seem to have a very sensible and workable (For you) approach to all this.
All the best
Ron
Thanks Murdoch, (Every day’s a school day’) I am indeed ecstatic with the 2%
Regards Ron
@Murdoch I am useless at medical questions I will copy your post to the Blood Cancer UK nurse advisors for you. @BloodCancerUK_Nurses
I also do not call myself a fellow sufferer, either a blood cancer patient (definitely not a patient patient !!!) or some people call themselves survivors (but usually after treatment)
For me it is just a turn of mindset.
This is a very personal reply.
Eric, I have considered often, what term best applies to those with Chronic lymphocytic leukaemia (CLL). I too, do not like the words, 'Sufferer or Patient, so the best I could come up with was Chronic lymphocytic leukaemia (CLL)’r
It seems that whatever term is used, there will always be someone who objects. So for the time being I will just stick to plain old Chronic lymphocytic leukaemia (CLL)’r.
Regards
Ron
Sorry to use the wrong word, Erica. I live and learn.
Thanks for forwarding the technical question.
You’re doing a great job. Thanks.
Yes, @Vindicatrix I like the term Chronic lymphocytic leukaemia (CLL)’er and often use it.
I think my terms are better used if I am not going to encompass all blood cancers
Thanks so much
Oh @Murdoch please do not think that you used the ‘wrong’ word, many people do use it.
It is just my way of thinking.
I like @Vindicatrix Chronic lymphocytic leukaemia (CLL)’er and often use it.
I do agree with you Erica, Chronic lymphocytic leukaemia (CLL)’er is a good compromise, I think.
Ron
I greatly respect your preferences on these microdetails of Chronic lymphocytic leukaemia (CLL) semantics but I’m truly sorry I inadvertently got into them. As a beginner at the moment feeling a bit rough with both Chronic lymphocytic leukaemia (CLL) and Covid, I don’t care about these subtleties. Sorry. But many thanks for your experiences and kind advice. It’s really great that you give up valuable time to this cause and you’ve been a huge help.
Hi @Murdoch,
I hope you’re well today and still very much on the right side of covid.
Your questions are really fair and often many people don’t realise or perhaps aren’t told about all the screening tests done when your being diagnosed.
Genetic testing for those with Chronic lymphocytic leukaemia (CLL) is often carried out as part of your initial blood screening in order to better understand ‘your’ Chronic lymphocytic leukaemia (CLL) and also helps clinicians decide upon best treatment pathways.
Our webpage here talks through a little bit about this- Chronic lymphocytic leukaemia (CLL) tests after diagnosis | Blood Cancer UK.
Don’t hesitate to note down any questions you may have regarding this or anything else Murdoch as your team, I’m sure will be happy to discuss this with you.
I can see you also raised a good point about the relationship of a persons neutrophil count and infection risk. You are correct that there is a strong link between the two, as our neutrophils along with our lymphocytes make up our immune defence ( white blood cells).
We know that when you have low levels of neutrophils in your blood, your immune system is weakened, making it harder for your body to fight infection. Typically called neutropenia.
Neutropenia typically occurs as a result of cancer treatments, such as chemotherapy, medications which suppress your immune system or a stem cell transplant.
If you wish to read up more about infection risk in blood cancers Murdoch i have linked here to some of our information pages- Infection risk and neutropenia | Blood Cancer UK.
I hope some of that is useful Murdoch and please don’t worry about knowing everything all at once- blood cancer is certainly complex and so much is often learned along the way.
Take Care, Lauran
That’s a brilliant and helpful reply and I’m hugely grateful for your time and effort in answering my beginner’s queries so thoroughly and using words I can understand! You have certainly made me feel a bit more empowered by having these two new pieces of knowledge. I am increasingly thinking that my Chronic lymphocytic leukaemia (CLL) really is at an almost negligible early stage and that is very reassuring. My neutrophil levels haven’t changed at all over recent years, my lymphocytes are around 17, I have no enlarged lymph nodes and no symptoms other than occasional fatigue which might just be my age. And maybe I just worry too much after the shock of being told I had leukaemia when in fact I thought that healthwise at 79 I had ‘won the lottery’. These were my exact words to my GP when I entered his surgery for a routine checkup. I left 10 minutes later mentally shattered.
As for the Covid, my wife has tested negative for the first time today and I hope to follow suit in a day or two. Just physically exhausted but all the main flu-like symptoms have gone. Onwards and upwards and thanks again to you, Lauran.
Well I’m 12 days since first testing positive and am still doing so with clear Covid symptoms, like having a heavy cold and wobbly legs. I finished a 5-day antiviral course 8 days ago. 3 days later, my test line was extremely faint and I felt better. But then the symptoms returned and, ever since, I’ve felt rough again testing strongly positive. This seems to me like what’s called Covid rebound. I’d say that, although feeling ill, these are relatively mild symptoms. I have no difficulty breathing, no chest pain. Given that I’m basically 80 years old with early Chronic lymphocytic leukaemia (CLL) and heart problems, should I be contacting someone about further treatment or investigation or is it totally reasonable to still have Covid 12 days after first positive test, given that my immune system is probably weakened. I’m not sure whether this is something to worry about or not or whether to contact the antiviral medic or my GP or just see how it goes for another week or two.
Any advice welcome!
Good morning Murdoch,
I am so sorry to hear that your symptoms have returned. As you mentionedin your post they are likely to be the effects of COVID or Paxlovid rebound, we talk about it here in a blog from late last year: Paxlovid rebound - what we know | Blood Cancer UK
Whilst I am happy to hear that your symptoms are relatively mild I would have a low threshold in reporting any deterioration to your GP or Haematology team. I would relay your symptoms returning to the Anti-Viral medic if you do have a contact number for them so that they are aware of your situation. Otherwise, rest and recovery. It is not unusual for this to happen but it must be frustrating for you.
Do take care and we are also here if you need us,
Gemma
Hi Gemma. That’s exactly the advice I needed.Thanks so much. I do have a contact number for the anti-viral medic and will give him a ring. If I feel any worse, I’ll get in touch with my GP.
I really appreciate your support. Great job.
A pleasure to help @Murdoch, wishing you better.
Gemma
Contacted the antivirals doc who confirmed everything you said and noted the rebound. Also I completed a yellow card report, as per the site rebound reference you gave me. So basically keep monitoring my condition and she actually used your exact words about having a low threshold for contacting my GP if there’s any deterioration. In which case, it would probably be hospital and steroids. Hopefully that won’t happen. Her overview of my data and our chats by phone was that I should recover soon. I sure hope so! But it has been so supportive having your great advice. Thanks again, Gemma.
Hi there i have had a cold for about 2 weeks now,cough has gone away but still get the odd sneeze and slight runny nose,its left me with a dry throat though and a feeling that my chest is heavy,ive been having a few anxiety attacks because im on watch and wait and go back to hemotoligist on 4th of Jan 2024 for bloods again,i also get nipping types of pain around the rib area as well,it could all be down to anxiety with me as im just recently diagnosed 2 months ago
Hi @HenrikLarsson67 I think anxiety can be crippling so be very kind to yourself.
Colds and coughs can really run me down so quickly and it takes me so much longer to build myself up again and my anxiety really take a hold when I am run down.
It is early days for you, you are doing fine and your appointment is in 3 weeks, it is my birthday so I will be thinking about you !!
Look after yourself and please do keep posting, that is why we are here.