Are immunity levels regularly checked for CLL, and when are the results given to patients?

[catmad1]

Following on to my 'lowered immunity' which I think I have, and the useful replies from several kind people, I have to admit that in the past 17 years of a fairly indolent CLL journey, I have never been made aware of my immunology status. For the first few years I was in the care of a medium sized general hospital haemotology dept, where the patients were not encouraged to have printed blood test results handed to them. Then once a locum consultant provided me with a copy of the results, and the scales fell from my eyes! I then requested a move to Addenbrookes where Dr Follows shows a keen interest in CLL. However as an 'indolent' patient I often end up being seen by various registrars, who show varying degrees of interest. One really annoyed me by her cavalier manner and I wrote a letter commenting that I had spent more time with the phlebotomist than the doctor had spent with me! It seems that unless a patient is showing really acute signs and symptoms that very little interest is taken. However having this problem for the past 17 years means that it has not gone away, and remains my biggest concern as now widowed and living alone, on 'off' days, all I can do is hunker down, and hope that the latest illness does not develop into something that requires a hospital stay. Somebody recently said 'do you stay in bed?' Whats the point of staying in bed, when there is no-one to bring you a cup of tea or fill the hot water bottle?

However the point of this moan is that the routine for blood tests at the usual (annual) visit is for the blood to be taken before seeing the medics. At what point is there opportunity to request examination of the immunity levels? As I have said, the local gps surgery is in melt down, and nice as the various locums are, when you finally get to see them, they seem little aware of the complexities of managing CLL, or the tests necessary.

[Newdawn Administrator]

Hi catmad and I replied on your original post about the need to have your immunoglobulins checked. I wonder if this is one of the things that has made you question what is being checked and monitored in your case? It must be very hard when the medics haven’t made your a partner in your care and shared lab results. I absolutely agree that if the ALC isn’t progressing quickly and all other levels are within limits, their interest can be cursory and not address important issues. If you feel you’re experiencing frequent infections, please push them to test your immunoglobulins and insist on the print out. Don’t however start imagining that there are serious immunity issues in existence because not everything is CLL related. However, after 17 years on W&W, I think you’re right to have a bit of a ‘stock take’ as it were.

In order to explain the immune system and assist you in your questions, I’m posting this excellent link. It describes the function of immunoglobulins very well.

primaryimmune.org/about-pri...

Your question resonates with me because whilst I’m only 6yrs on W&W and my levels are at least 4 time higher than yours, I’ve begun to question the whole process. It seems to me that these consults gather but don’t act. They monitor but don’t explore further and that’s my issue with NHS haematology when delivered at local hospitals. Nothing much is pursued unless it’s specific B symptoms and I find my haematologist shrugging his shoulders and simply gathering info which is then sent to my GP with a copy to me. It’s a shrugging shoulders exercise waiting for the whole foundations to collapse but nobody seems to be addressing the falling ‘debris’ in the interim.

Wishing you the best and hope you get the answers you need but in reality, your CLL isn’t looking or sounding too bad presently so don’t imagine there must be problems when they simply may not exist. We get other things and we get older...none of which help!

Warm regards,

Newdawn

[catmad1 in reply to Newdawn]

Thank for the link to the Immune deficiency foundation. It is a very interesting book.

I am getting various problems every two/three months. The usual chest infections, twice really nasty bouts of diarrhoea which have lasted four/five days (no obvious cause) and a constant feeling of total exhaustion. Apart-from that I'm fine, other than being 80 years old.

Does that give you any clues?

Cheers

Catmad

[BeckyLUSA]

How often are you having infections? You might need to start going to the doctor for them, rather than hunkering down all the time and waiting them out, in order for the docs to take them seriously. Don’t know how hard this is in the medical system you are in. When I was diagnosed my oncologist looked at my history of frequent infections and tested my immune levels with everything else, Fish, etc. He wanted to start me out on IVIG immediately, but was having problems with all the insurance issues. That was about the same time that I found this website and read about the importance of a CLL specialist so I found myself one about 2 hours away. He put me on IVIG in September, 2016; I had no infections whatsoever until Feb or this year when I got a UTI (probably due to the Venetoclax, per my doctor).

I don’t blame you for your rant! Good luck with trying to get this sorted out.

BeckyL

[Psmithuk]

I can sympathise - also long term indolent CLL, of little interest to the clinic or GP. However, did you see Hairbear's post, above? Maybe the buddy system might help you.

I don’t know how long you have been on your own, but wondered if you need a bit of help with depression? Perhaps just a chat with someone from Macmillan might help.

Best of luck

Chris in Wales

[catmad1 in reply to Psmithuk]

Hi there chrisgranny

Thank you for your reply. Yes I probably am a bit depressed, but I am not keen on the thought of anti depressants, and I do have a fairly wide social life, choir, art classes, church, volunteering for Leukaemia Care, coffee mornings etc. At 80 I find my energy levels are not that good now, and I have been putting this down to a low folic acid level and slight anaemia.

I did get to know some of the local Macmillan team when my late husband was in the later stages of motor neurone disease, and frankly I was not that impressed by the individuals I met then. They were difficult to engage with, or maybe at the time I was under so much stress that nothing could have made a good impression on me.

Anyway, thanks for your interest.

Catmad

[Psmithuk in reply to catmad1]

Sorry I couldn’t help, but keep smiling!😄

[cllady01 Former Volunteer]

Catmad: here is the buddy system posting. I wish there was such a thing as this in my country. I hope you find it helps you to interface one on one with another CLLer. There is a lot to be gained by both you and the one with whom you might interact. Best wishes

CLLSA/Leukaemia Care UK buddy scheme now live - Do you want to connect with someone who has experience living with CLL?

HAIRBEAR in Leukaemia CARE a day ago

If you live in the UK and have been diagnosed with CLL or are a carer (family member) you can now get support by talking with a CLL buddy. T...

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[catmad1 in reply to cllady01]

HI CLLADY01

(interesting nom de plume!)

The ironic thing is that I am a volunteer for Leukaemia Care, and have been so for more years than I care to think. I have been a 'buddy' and also at times take the helpline, but just because I am a helper, doesn't mean I don't need a buddy of my own. I have now been living alone for over 6 years since my husband died of motor neurone disease, and the family live some way away, the nearest some 30 miles, and the furthest in the USA. It's just that I don't want to be a kill-joy and seem to others that I am being a wimp, when to all around I seem to be coping with everything that life slings at me. Probably my problem is that I am lonely and have no-one to off load to. This may be why I find it easier to have a moan to people 'on-line' as I can remain more or less anonymous. It's all about putting a brave face on it in public, while inside I feel very vunerable and alone. Also no-one wants to admit to be scared of the prospect of increasing ill health and either ending up in a poor care home, or even ending ones days alone.

Anyweay, thanks for your interest, and for being 'there'.

Catmad