Dear @Murdoch
Really glad to hear the process was smooth and that you are already taking the anti-virals. Hoping that you feel better soon.
Take care
Gemma
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Thanks Gemma. Hoping for improvement. My wife has been positive for two days more than me. Do you know whether we should still be minimising being together in the same room? And any guesstimate of how long it might take for an early Chronic lymphocytic leukaemia (CLL) person of nearly 80 but who is on antivirals to feel good again?
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Dear @Murdoch
In terms of being in the same room as your wife, it is very challenging to ‘isolate’ when you live with someone. I would suggest (and apologies there is no exact science about this) keeping a social distance in the same room, not to share towels and handwashing regularly.
The aim of the anti-virals is to minimise the severity of COVID and also reduce the time the infection lasts too. It is a challenge to say how long it will take for you to feel better but I would hope see some improvements within 2-4 days of taking the tablets.
I would add that if you symptoms are not improving and you are feeling worse please do contact your Haematology team.
Take care
Gemma
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Thanks, Gemma. It’s really brilliant having this kind of advice on line. You’ve no idea how supportive it feels. We are largely keeping to different rooms and use different washing and toilet facilities. I guess we’re lucky being able to do that. I suppose the severity of the Covid depends partly on viral load so probably wise to minimise close contact. And of course, we’re washing hands and using gel routinely. I really look forward to feeling better. At the moment, it’s just like having flu. My haematology consultant phoned an hour ago and reports that my latest blood results show only minor change and are not worrying. Unfortunately he seems reluctant to give me my numerical blood data yet I’m keen to know what they are. Also I never get to see his reports to my GP. I’m a retired scientist and worked with data all my career. Surely I have the right to insist on seeing this info. It’s mine after all! On this and related fora, I see loads of folk discussing their own blood numbers in huge detail so should I make a bit of a fuss with my GP or haematologist? I’m generally good at making fusses but would have much preferred to have been informed as a matter of course.
Thanks again and best wishes,
Murdoch
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Dear @Murdoch
You do indeed have the right to request your blood test results and it is normal practice for the numbers to be included on the clinic letters sent to both yourself and your GP. Perhaps it is worth asking your GP or you could speak to your Clinical Nurse Specialist and ask if they are able to help you?
Let me know how you get on,
Gemma
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Thanks, Gemma. It is good to know that I should be included in, if not central to, the information-exchange loop. I’ll sort this out with my GP soon - once we’ve recovered from Covid! I guess that many patients are happy just to hear that there’s only a slight change in blood results but not me! I want to know what ‘slight’ means and in what. The medics probably think I would over-stress unnecessarily. Thanks again for your advice.
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Hi @Murdoch when I first started to chart my blood test results 19yrs ago I did it on graph paper, but it got so unwieldy I had to enter the 21st century and do it on my laptop.!!!
I have found that my blood test results can slightly fluctuate.
Look after yourself first.
When I spoke to my haematologist yesterday, he said that rates of change etc are no longer the determinant of treatment options. True?
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Hi @Murdoch I will copy your post to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses.
Take lots of care
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Thanks Erica. I’m guessing that, rather than judging, classifying and treating based on blood numbers and trends, they prefer to give priority to the number and severity of symptoms?
That must be some length of graph you’ve got! How much can blood results change in 19 years of w&w and not need treatment?
Feeling a lot better this morning. Fingers crossed!
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Good Morning @Murdoch,
I hope you & your wife are recovering okay from covid & are able to get out into what is slowly becoming a beautiful sunny Saturday in Scotland.
You are correct in your thinking that the optimum time for treatment is carefully considered and not simply and individually based on blood results.
There are several things your doctor will consider when deciding which treatments to recommend:
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Of course any current symptoms - How they are impacting you & your everyday tasks.
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Your overall health and fitness – This includes whether you have any other conditions such as kidney or heart problems and age related conditions.
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Genetic test results – Testing for changes in the genes of your Chronic lymphocytic leukaemia (CLL) cells will help your doctor recommend the best treatment for you.
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Your response to previous treatment – If you’ve had treatment for Chronic lymphocytic leukaemia (CLL) before, your doctor will look at how well that treatment worked and whether you had significant side effects.
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Practicalities and preferences – Your doctor will also take your personal circumstances into account, such as whether treatment at home or in hospital is better for you.
If this is something you wish to better understand from your own teams perspective, certainly don’t hesitate in asking that the next time you speak with your consultant or your nurse specialist team.
As always Murdoch please do remember that if it feels easier to talk anything through with us, we are only a phone call away- 0808 2080 888.
Take Care, Lauran
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Hi Lauren,
Yes, it’s a glorious day here and we hope to hit the loungers soon! Still feeling a bit rough from Covid but slightly better every day.
Thanks for the useful detail of your message. That all makes great sense. The only thing I know nothing at all about is the genetic test of my Chronic lymphocytic leukaemia (CLL) cells. Is this something that’s only done after a certain level of illness progression or is it routinely done for everyone diagnosed? I’ve only been diagnosed for 13 months and have been told my Chronic lymphocytic leukaemia (CLL) is still minor and I have no major symptoms. Neither of my two haematology consultants has ever mentioned a genetic test but then they’ve never sent me my data or reports to my GP. Does the genetic test just require a blood sample or is the procedure more demanding and specialised? Too many questions! Sorry! Don’t waste good sunshine and weekend time answering immediately! Nae hurry!
Best wishes and much thanks.
Murdoch
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Hi @Murdoch I think @LauranBloodCancerUK has answered your question far better than I could have.
Personally what I would say is what I have done and that is learnt to manage my symptoms so much better over the years i.e. fatigue, hot or cold flushes, feinting.
I think I have improved my diet, with a few treats.
I definitely am fitter now than I have ever been, I am a pilates girl and a walker. You have made me remember that I could only walk short distances when I was diagnosed and now off I go, I am a morning girl, I like a short nap and I am not an evenings person.
My diagnosis has given me the opportunity to think about life and what I want to do and with whom, I have learnt to say ‘no’ and my 70th birthday, just before lockdown, was my best birthday ever.
I still get anxious before and during medical appointments and I think that is natural.
Keep posting and I am glad that you are feeling a bit better today. I think it is natural to have good and not so good days. Be kind to yourself
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Thanks Erica. It’s very encouraging that it’s so possible to manage Chronic lymphocytic leukaemia (CLL) symptoms and to optimise and prioritise life’s options successfully. I will try to do that. I probably worry too much about medical appointments too. I used to lecture first year medics at uni and, as a result, probably don’t treat doctors with the sense of awe and blind faith to which they’re accustomed. I need to know the facts, the data, the interpretations, the options and the reasons for decisions and thus far I haven’t had any great satisfaction, apart from from you guys on this invaluable forum. Like you, I’m a morning person. My dog and I are rarin’ to go by 6am!
Keep being positive and helpful. Carpe diem.
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Oh @ I am not quite such an early bird as you.
As my GP said to me I can live with Chronic lymphocytic leukaemia (CLL) and I am more likely to get run over by a bus.
I have heard others say that they have been told that you are more likely to die with Chronic lymphocytic leukaemia (CLL) than from it.
I shall think of you and your dog as I go out walking tomorrow
Well, he gave me a long lie this morning, Erica. Face on my nose and wagging tail thumping the wall at 06.15! Lovely!
My two haematologists thus far have said these same things to me too. By far the greatest impact on me of being diagnosed with Chronic lymphocytic leukaemia (CLL) has been psychological. The shock and the worry. The constant wish to avoid catching any bugs that my immune system might not handle. The uncertainty of what’s ahead. The regular blood tests and stressful consultations. A new world of worry which is inconsistent with their comments about being more likely to be run over by a bus or, as both haematologists have said to me, it would have been better if I had not been diagnosed at all. How I wish I hadn’t been! On the other hand, here’s my first test - catching Covid for the first time. And, because of my Chronic lymphocytic leukaemia (CLL) diagnosis, I’ve had fast access to antivirals and am slowly getting through it well, I think. Too soon to be sure…
In your 19 years with Chronic lymphocytic leukaemia (CLL), have you withdrawn from putting yourself in places where you might be more likely to pick up infections, i.e. crowded places, busy trains and buses, busy restaurants, cinemas, theatres etc? This has been my tendency and that can be quite life-changing at our older ages. Particularly if it would have been better not to have been diagnosed or if you’re more likely to be run over by a bus! It’s such a dilemma what to make of it all!
Have a nice walk today and, as you’re always saying, be kind to yourself.
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Hi Murdoch I was struck by your last Paragraph relating to 30% Chronic lymphocytic leukaemia (CLL)’rs with Covid die. I also read that, and put it to my Haematologist, who confirmed those figures.
However, being a Bottle Half Full person, I see this as a positive, as it must mean that 70% do not die.
To me that is excellent odds, and I would certainly have a bet on them. (You have to laugh)
All the best Murdoch, you sound like the type of man who will 'Soldier on through, the ‘Manure’ of life.
Ron
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Hi again Murdoch, you are most certainly entitled to view your Bloods, and you should get a copy of your Haematologist’s report sent to you. If you do not, contact your GP and politely, and firmly ask for a copy. You will get it, you just have to be assertive.
I see my Haemo man every 4 months, and take a sample of my recent bloods with me. Some time ago I decided to go private on this, and it has been a good move so far. Unfortunately my local hospital is under immense pressure, and I am let ot believe that some Chronic lymphocytic leukaemia (CLL)’rs are waiting an inordinatlely long time to get even a phone call consultation.
I do appreciate that not everyone will be able to go the Private route, but nevertheless, notwithstanding that, please be politely assertive in all your dealings with your Chronic lymphocytic leukaemia (CLL) medics, you owe it to yourself.
Keep up the good fight, Murdoch, and let me know how you get on.
All the best
Ron
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Many thanks, Ron. I have already asked my haematologist to send me copies but he says he forgot! I’ll definitely get this sorted out though. I have brilliant GPs just a few hundred yards from my house and they’ll definitely supply copies. No need to go private up here in rural Scotland. Despite media and political propaganda, we have the best NHS service in UK. Which is probably one of the reasons that 80% of our rural community are folks who have moved north from England!
As I indicated before on this thread, I was a university professor who taught medics so they aren’t up on any pedestal as far as I’m concerned. Like my haematologist, they can forget and make mistakes. We will prevail! Thanks for your reassurance. All good wishes.
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The 30% figure is out of date, Ron. It was early, pre-omicron and based on hospitalised people. Subsequent larger studies on the general population level in the post-vaccine omicron era have put the number nearer 2%. If you were happy at 30%, this should make you absolutely ecstatic! Tie yourself down, Ron!
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