Back at what will soon be the largest blood cancer centre in Europe.
The queue for the blood test today made you think the extra patients are already here!. And I suppose I only have myself to blame going on so much about how UCLH have saved my life, and how good the A and E is, not to mention the 24/7 nurse helpline for all patients and the dedicated inpatient beds in case you need them. So perhaps I should say to the rest of you: don’t come! No seriously, do. Or at least do get yourself under the care of a truly specialist hospital team. It can literally be life saving.
Anyway as the patients come, the money also flows and they are recruiting new staff to go with the new facilities.
And personally I’ve always had the mentality that if you have to wait a long time to see a consultant it probably means that when you get to see them they will not be one of those who rush you out the door without answering your questions. And they try their best to help. I do wish the admin was a bit better though and they could make the appointment times a bit more accurate!
But like all of us the appointment nerves never stop.
Just three months ago my blood test confirmed again that I had MRDU at the less than 1 in 100,000 level. So really I should have no concern that today is the day they say “it’s coming back!” That should be years away almost certainly. Tho I suppose there is the slimmest of chances that my lymphocyte count might have shot up. But since it was only 0.4 (or 400) just a few weeks ago when I last had it checked how likely is that? And I don’t have any visible node growth either.
But it will never get easier sitting in this waiting room alone waiting for those few minutes that could at lest potentially change everything.
I do have a bit of a chesty cough which started as a cold two weeks ago, but I’ve only spiked a very mild temperature a couple of times, and had only the shortest little runs of tachycardia on my watch. So even I don’t think this is bacterial at the moment (tho I’m keeping a watch on it!).
I do have some concerns about the fact it has looked like I may have been passing blood in my Faeces every now and then and due to a calprotectin positive reading I’m seeing a gastro doctor tomorrow. That perhaps surprisingly doesn’t worry me too much.
Although it does bug me that I can’t seem to get fully rid of the itchy skin or nasal allergies. But that just seems to be my lot, and not anything else that can be done at the moment.
However, really the thing that bugs me most is the thing that despite their high tech Expertise I know they won’t be able to do anything to help me with: the physical mental and emotional fatigue. This is so much better than it was but I still find a normal day at home a real struggle let alone a day in Hosptal outpatients. But I’m very grateful for the hospital transport I’m entitled to.
So here we go.
My neutrophil count is the thing I haven’t mentioned yet because I’m trying not to be concerned about it. It’s been bumping up and down randomly for the last few months. One minute a healthy 3.5 (3500) the next 0!
The theory being my body makes enough when I don’t have an infection but can’t ramp up production.
Which is it to be today? Am I crazy that my biggest concern about that right now is not the health implications of this but rather hoping I don’t have to get a prescription for GCf and therefore another wait here!
UPDATE
As expected my lymphocytes continue to be safely low. 0.42 or 420 is apparently what you might want to see after a successful CLL treatment. As most regulars will know these cells produce antibodies but to be honest most of us will not have many healthy new antibody producing lymphocytes even before treatment. So they don’t do anything except offer IVIG or SCIG but only if the IgG drops below a certain cut off (which seems to get lower by the year as rationing gets worse).
But low neutrophils potentially pose a more immediate problem. As in if you get an infection when you have low neuts you can get neutropenic sepsis which is a medical emergency. With me it seems that perhaps this viral cough has used up most of my neuts (the specialist today agrees my chest still sounds “clear” and the absence of a fever / tachycardia all point to viral at least for now).
So today’s reading is 0.41 (410) which means it’s time for more injections and so as I write this I’m still waiting for the transport having had to wait for the pharmacy.
It’s easy to get a bit complacent about low neutrophils, and I’m pretty confident they will respond well to the injection that encourages them to grow. I guess I just wish that I wasn’t still having to be concerned about this nine months after chemo.
Having said that NONE of us should ever think we are completely safe from low neuts or indeed anaemia or low platelets. All of these could potentially strike someone quite quickly even during watch and wait. Just one more reason why a fever, or feeling significantly unwell should mean an urgent assessment often in ER / A and E where they can do an urgent blood test as part of an infection screen. Of course since I have no fever and we are quite confident this is a viral infection, and that I usually respond to GCSF quite well, I have avoided the need for A and E or admission once more.
It’s a strange feature of the last two and a half years that I am actually feeling really pleased to have managed to avoid an inpatient stay actually for a whole year now! I’ve come close a couple of times. But here’s me again...saving the NHS a bit of money by being proactive together with my Doctors and nurses!
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Yeh sorry. Was writing and they called me in! Hit publish as I stood up as the app sometimes loses the post otherwise. Have gone in and written an update now
Neuts low. So time for more GCSF. Still seems to be following the pattern that in between infections I can manage to make enough Neuts myself. But looks like they want me to take these for most of the next month unless the levels go really high I suppose. The plan is three days consecutive this week to boost them with a retest Friday to make sure it’s worked. Then on to twice a week.
I was still waiting for the transport home when I wrote the m comment! Now at least I’m finally on my way home but al caught up in the Trump related chaos on the roads (NATO summit in London this week).
I don’t think that feels to me like the right answer to wait till you have an infection! Mine were 0.4 today. I think certainly anything less than 0.5 or maybe even a bit higher will lead to the UCLH docs breaking out the injections. Three weeks ago it was 0.78 and they didn’t mind that.
Lymphocytes are still 0.4 too. So they say there’s no point seeing how many CD4 I have as it clearly isn’t enough so I keep on the prophylactic treatments.
IgG is continuing its slow descent. Still just above 5 which would have meant a tick down and IVIG was on the table but they are now saying it has to be less than 4. Apparently some people’s IgG just doesn’t work properly so it probably would help me. They can’t make exceptions tho until I have the serious infection leading to a hospital admission they all think is coming (but me and my GP keep being proactive and catching these things early!). My immunologist said I need to get worse before I get better! Which is why I won’t be pursuing the other idea I had of trying to wangle it on private. They possibly would fund it (tho private immunologists are meant to follow the same rules...) but would only give me a few months and then I’d be back to square one with the NHS anyway.
Unfortunately tho i was also told I don’t have any of the new antibodies being formed at the moment.
Crucially people’s immune FUNCTION can be very different with the same numbers or so I’ve been told. So it’s not as simple as if you have counts of X or Y you should be fine.
I’ll say it again for anyone new reading this, we should think of ourselves as severely immune compromised from the moment of diagnosis even if it seems like we aren’t getting infections. If we do get an infection we should seek help much more urgently since our immune system may well not respond as well as a healthy person. And if we do need antibiotics we may need a longer course than usual. This is a lesson my GPs and I have learnt for ourselves. If for example I get a throat infection and a combination of a specific location, fever, and tachycardia make us think it’s bacterial...if I only take a week then sometimes it looks like it may have gone but then comes back with a vengeance within a couple of Weeks. Actually these days even tho I usually get very quick initial improvement which also makes us think it’s bacterial at those times (temp and tachy disappearing after first dose, but then returning when the second is due...) it has sometimes taken a whole month of antibiotics before my symptoms resolved.
Right now we still think my two week cough is almost certainly viral so we have not started antibiotics yet but are ready to do so if things start to change.
Hi Adrian, Thank you for sharing your experiences so vividly and I am very glad that your treatment is heading you in the right direction. You mention an itchy skin and nasal allergy problem which made we wonder if my “Rudolf Rashes” are CLL related and whether this is a common symptom. I’m on Watch and Wait (& wait & wait...) with Lymphocytes in the high 20s but generally unremarkable bloods. I get general skin itching and a red tip on my nose which is relieved by antihistamine and may be diet related.
I take daily antivirals following a possible Shingles rash. Next week I’m seeing a Dermatologist at UCLH as I have a history of basal cell carcinoma, if I get any answers I will let you know! Take care
Hi Adrian, CLL is still hanging on by it's finger tips with you, but hopefully it will soon let go ( well for however long you in remission for, very long we hope).
I am so please that you seem to be on the right track.
Just a point re you saying we should go to A&E when we feel ill or have a fever.
I was extremely ill on Friday evening/night with projectile vomiting which lasted from 10pm Friday to 8am Saturday. I can't tell you which part of my body hurt the most because it all hurt, my skin hurt to touch and i had zero energy. I slept most of Saturday.
I rang the Emergency Assessment Unit at my Cancer Unit, to be told to rest, drink as much water as i could, even if i was sick again and to contact them if i got worse. At no point did she say to go to A&E.
Sunday i was exhausted but managed to eat toast and plain biscuits and i went to work on Monday.
Tuesday morning i got severe diarrhea and rang the hospital as i was due to go for my 6 month treatment check up, again i was told to stay at home, drink plenty and rest. She even said that i couldn't go to the hospital for 48 hours after my last bout of diarrhoea or sickness.
There is a fine line between not doing enough or being over zealous when it comes to contacting the hospital when we are ill. It was because of the posts on here and people saying you should go to A&E that i rang the hospital then was left totally confused when told to stay at home.
I understand that to take an infection into a hospital is really not recommended, but given our compromised immune system, the dehydration caused by sickness and diarrhea, the fact i couldn't take any of my medication on Saturday and i felt genuinely really poorly, i was expecting more than to be told to drink plenty.
Seems there is a lot of Gastric Flu going around at the minute and i seem to have got it.
Thanks for your updates, i really look forward to reading your journey.
Did you have a fever? Sounds like you did the right thing by calling them. And they gave you some directions to manage it. As you say it’s not always easy to draw the right line but D and V is fortunately usually self limiting. She did say to contact them again if you got worse, and I suppose that’s the time she’d have said go to A and E.
I’m talking physical energy, that battery that means although I can now walk a little after not long at all I just can’t keep
Going. Some of that may come with more training but it still seems really hard to get my muscles growing like they normally should. Not sure why. Also my tolerance is slow to build up. And gets much worse every time I have so much as a sniffle.
Mental energy also. I can’t concentrate on stuff like I used to. But the mental fatigue at several points were so bad I could t really concentrate on and enjoy even a silly movie or TV program. It’s better than it was. But if I ever want to be normal I’ve a LONG way yet.
Emotional energy. Part of fatigue is finding small things emotionally draining. Whether that’s taking to people or dealing wirh minor stress like having a decorator in, or even just interacting wirh the family. I used to be an extrovert now I just can’t be bothered.
So it’s that all encompassing fatigue. Which is definitely better than it was. But work seems like it might even be impossible. I’m not sure I’m ready to give up on that tho! So for now I haven’t. Tho that increases the frustration. It’s the uncertainty that is worse to cope with. I sometimes say it if someone had said you definitely
Won’t work again it would be easier than this because you learn to adjust. As it is now I don’t know how high to aim. The longer I’m off the more I think it’s probably not going to happen. But I’m 48 and somehow retirement seems like it shouldn’t start yet.
Of course the prospect or this wading through treacle feeling remaining with me for ever is not great either. Some
Days I sleep till 1pm. Some days I’m in bed at 5pm. Not usually the same day but still!
Quality of life is not greet.
And of course increasingly I’m losing my friends as most of them I no longer have anything in common with. I also have little in common with my wife these days who is working all the hours under the sun. And by the time she gets home I just want to sleep. And so it’s also hard to motivate yourself to get out and do stuff when there’s not many people to do it with.
I had extreme fatigue before treatment. Now it’s perhaps just significant. But boy does it wreck my life!? It’s by far the hardest thing about having this disease as I was a very proactive workaholic who was very good at communicating complex thing simply. These days I often struggle much more than I know how to explain to understand stuff especially over a longer period if that mKss sense.
An honest, open and trusting reply which I really respect.
You articulating what many of us feel and what are the effects of having a chronic serious condition, which is complex, heterogeneous, individual in its impact and is evolving.
It seems to me each of has to find our own way with it. Supported of course by communities such as this one.
Nevertheless you clearly identify Physical, Mental and Emotional impacts as discrete entities, clearly with different impact. Cognition issues and fatigue in the mix.
Your relative youth affords you perhaps more resilience - but causes the anguish of a halt in career. So different from myself, content in retirement at 63. Our age alone brings different challenges.
I recently heard from a notable medical resource, as CLL becomes more manageable, the "living with it" will become the clinical challenge.
I have no slick answers for you my friend! Except a direction and a target to work to my add some momentum.
Hi Adrian, Thanks for all the help you always lend to our members. I am sorry you have been feeling so badly. The worst is that what you are describing are symptoms and side effects that are not measured in the lab work. Are you certain that one of your other medications is not causing some of your symptoms? Maybe look into them better and see if you can eliminate one and see if you feel better. Are you taking an antidepressant? That will surely help. This disease messes with so much of our body and mind and it is hard to measure all that it can do. It feels subjective but it is real.
I don’t believe it’s any of my meds as I’ve been getting better not worse as the meds were added. At the moment not keen on an antidepressant for various reasons but will keep it in mind.
Thanks. I get so frustrated sometimes tho as I struggle to find words which I never did before. I also make way more typos presumably due to poor concentration, I find it much harder to compose writing, and to communicate as clearly as I want. I also find dealing with any emotional stress just exhausting.
I also struggle to find words and I often can't remember people's names unless they have been in my life for a long time. My doctor first associated it to "chemo brain", but I have been in remission from FCR now for a year and a half. Does chemo brain ever last that long or am I losing my mind? I also have that problem of dealing with emotional stress being difficult and I cry more than I ever did before. I often wonder if my mind will ever get back to what it used to be.
Thanks! A very interesting video which shows that more research needs to be done in this area. I was 13 q mutated so I don't fall into that group that they say has a higher incidence of impairment. My W&W was only two years and my FCR was cut short because it almost killed me so maybe that has something to do with it. Who knows?
Chris were you already like this before chemo? I definitely was. I really don’t think you are losing your mind. I believe it is a manifestation of fatigue. Tired people get ratty and emotional they are clumsy careless, have poor concentration and can’t string a sentence together! Why shouldn’t fatigue do exactly the same thing? I think of it as like having batteries. One physical, one mental, one emotional. And like a dodgy old iPhone my batteries never get fully charged, I crash and burn suddenly (hanging suddenly at 30% percent rather than gracefully continuing to 1%) and run flat MUCH more quickly than I should.
This is why if I stay in bed all morning and don’t do much then meet someone for lunch they might think I look and sound relatively normal. There were times when i didn’t. So now folks sometimes say things like “wow it’s like having the old Adrian back today!” Then I’m so exhausted on the way home I really am just desperate to go straight to bed they don’t see that either!
I was like this a little before treatment, but it seems to have gotten worse since treatment. I used to blame it on taking Gabapentin. One of the possible side affects of that is memory loss. Maybe now it is a combination of the Gabapentin and fatigue. I have asked my doctor about these problems and he said that I need to workout more and get in shape. I have tried that, but sometimes just don't have the energy or drive to get going.
I'm sure you've explored all possible explanations, but I wonder if some sort of CFS (Chronic fatigue syndrome) has set in?
I expect you've considered this already - such a pity that (as far as I know) there is no current way of testing for such a thing and no easy way of treating it. It might help to have it as a diagnosis though, so people might understand you better.
Our younger son had CFS during his mid teens, and it was a very hard time for him and all our family.
He had been doing well at school, he was a cheerful, sociable boy with lots of friends. He was very sporty and represented his school in cross-country running. Then he had a severe viral illness, after which he was incapacitated for several years. He couldn't walk far, he found it hard to concentrate for long.
The medics were very unhelpful - thought he must have school phobia and should just push himself harder! What ignorance! What insensitivity. I was so angry...
Our son was an extremely determined character. (He still is). He worked hard from home to take GCSEs, went back to school part time to take A levels, and got to uni only one year after his age-group. During his uni years, his health gradually recovered. Having got his degree, he took himself off back-packing round eastern Europe, by himself but making friends as he travelled. He managed to stay a very outgoing, optimistic person, in spite of all that happened to him.
We never got any medical explanation of his terrible fatigue, other than the fact that some viral illnesses take a VERY long time to fully recover from.
I'm saying all this to try and give you some hope - hope that even if you do have CFS - it can get better in time...
Chronic fatigue syndrome is a diagnosis given when there is no logical explanation for the fatigue. With me there is: CLL. It got worse and worse the higher my lymphocyte count got. To the point I was bedridden around the time of my first chemo treatment. And despite taking more chemo it actually got better as my count went down.
And sadly enough people have reported that the fatigue doesn’t necessarily go away when you get to MRDU. For sure it’s multi factorial. But the immune system is intrinsically liked to fatigue. Your body is told to rest when you are sick to get better. As many say including myself the daily symptoms are best compared to how we used to feel when we had the flu. But we never wake up feeling refreshed. Literally if I have 13 hours or more sleep as I do some nights I don’t wake up any more rested than the other odd nights where for whatever reason I don’t sleep more than two hours! Sometimes I wonder why I bother sleeping at all!
It was yesterday. As suspected they want to do a colonoscopy. The calprotectin is ironically enough released by neutrophils and so the presence of that in waste product usually indicates some form of inflammation in the gut.
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Richter's in Remission - 11 months post transplant 
Post FCR treatment 3 months blood test just taken results lower then expected
CLL chemo more than 10 days fever!
Chemo 
