As I sit down to write this, having just been for my Flu jab, I realise how quickly time has gone by. Another year heading by. If you are new to CLL then have a look at Nick’s post about flu jabs:
. . . including the link on that page to the information on the CLLSA web site. Also from Neil (note the comment at the end about Neutropenia):
Now I owe you all an apology for not posting for a long time. Post FCR treatment things are now generally very good, with just some minor issues which I really shouldn’t mention, as they are so trivial on the scale of what many CLLers have to endure.
For anyone who wants to read my previous posts on the 6 rounds of FCR treatment (Dec 2014 to May 2015) on the FLAIR trial, and a few extra Posts to get started:
So what happened to me after round 6 in May 2015, well over a year now?
Before I answer that I have to say a really big thank-you to you all for your posts and those that have helped me since round 6 for getting me through this period, because I had big problems with Anaemia (Red cell Cytopenia) a lack of Red Cells, and after the big relief of sorting that out, I had continued Neutropenia until about July this year 2016
I don’t think my results are at all typical for an FCR patient and that’s why I’ve resisted posting until now. As they say – we are all different. So read as many stories as you can and want to, for a balanced view.
Aside: For anyone new to Haematology and wanting to understand the terminology of cell production (they all seem to come from the same stem cells) then try the following Wikipedia:
Erythrocytes are mature Red blood cells (Reticulocytes the immature developing Red cells)
So, for those that like the numbers here’s an extract of all my results (from Dec 2014 just before the start of FCR onwards) to illustrate the ups and downs and eventual recovery (if unsure of the units then just look at the “Normal Ranges” to get a feel):
Note the May 2015 results are after a 7 day course of GCSF, to prepare for the last course of chemo, hence raised neutrophils.
So my first problem in the summer of 2015 was lack of red cells (red cell cytopenia). You really want Hb >100 g/L to feel reasonably ok and I really can’t recommend the levels I got down to between transfusions.
From my records, I had four transfusions for Red Cells after the treatment finished in May 2015, a very sobering process. My medical team were I think happy to continue until about Christmas, and we didn’t discuss what happened then. As the months ticked by I slowly got more convinced that recovery was less likely.
I have to say a really big thanks to AussieNeil and Chris (Cllcanada) for guiding me to the more difficult articles on the internet to convince me to relax a bit, sit back and be patient. Thank you.
My last transfusion was at the end of July 2015 and recovery came in August that year when I at last got improving results without needing another transfusion.
As I said in my last post I am truly humbled by those who donate blood for the benefit of others. It’s a gift that you just can’t make in a laboratory.
After the Red cell recovery the next focus was the Neutrophils. By September 2015 these had declined to 0.25 and a decision was made to try a five week course of G-CSF injections to try to kick start the production. I’d had G-CSF during the FCR treatment when it worked well, so decided it was worth trying despite the risks that if it didn’t work it could perhaps prolong things.
Whilst G-CSF worked well while I took it, side effects included headaches, wobbly temperature at times, night sweats, digestive upset, difficulty swallowing for a few days, and toothache for a couple of nights. It can’t have been that intolerable though as I did decide to go away for a couple of weeks’ holiday during that time. I didn’t manage to walk more than a mile or so at a time during that holiday, and learned to take it easy whilst on G-CSF.
I delayed my flu jab that year until after the G-CSF so if there was a problem we wouldn’t be confused about the cause. The Neutrophils stayed up long enough for the flu jab but unfortunately decayed away again at each blood test until down at 0.11 in Feb 2016 this year, and stayed stuck at that level for many months.
There would perhaps have been the option to take G-CSF permanently, but this was not one I’d want to choose initially with the symptoms involved. So my decision was to stick it out and see what happened.
During the winter I continued to work and go into the office (open plan) where people obviously have colds.
I have to say thank you for all the advice on HU for avoiding picking up infections.
Somehow in my case with severe Neutropenia I was very lucky to go all winter without picking up an infection, and ending up hospitalised. I’d been to hospital in one of the early rounds of FCR so I wasn’t afraid of that prospect, but it was one to be avoided if possible. It was very much on my mind that making myself a hospital admission could be a place short for somebody else who needed it.
Having got through the winter a funny thing then happened. In July this year I was in the office at work and felt my temperature rising and getting the thermometer out, that was confirmed. Things seemed to stabilise by the end of the day. Feeling a bit foolish, but following the hospital instructions, I visited the GP the next day to get checked out, and was put on a course of precautionary Co-amoxiclav 500/125mg. I already had those with me, as recommended. Of course I also got some blood tests and was very pleasantly surprised to find out that I had at last got some Neutrophils, lots of them initially at 5.03, then three weeks later still good at 2.7 (see the table above) so recovery from the Neutropenia confirmed. Big relief!
I’m sure somebody can explain it to me, but perhaps I was too careful and just needed to catch a cold to kick start the system. Or was the raised temperature caused by the first rush of Neutrophils finding the target?
So what have I learned from all that?
Patience really is a virtue and one I think I have re-learned.
My understanding changing from “typical FCR recovery within about 6 months” to “could be 18 months in some cases”. So I came out at about 14 months total.
All that said I certainly wouldn’t chuck away any of those months if you gave me the choice, nor the 6 months of treatment, which in many ways were easier than the recovery afterwards (sickness/nausea days aside).
So now it’s back to “Watch and Wait” and the rollercoaster rumbles on, hopefully reasonably smoothly for a while.
What symptoms am I left with?
I’ve still got sore hips particularly the right hand one where I had my last BMB (I’ve no idea though if there is a connection). The hips did get better by the end of this summer, but have just gone again I guess with the cooler temperatures, so I’ll start icing them again after exercise.
I’ve also got a BCC basal cell carcinoma (from early this year) which can now be finally operated on as I’ve got some Neutrophils. So that does confirm to me CLL patients need to take care in the sun (I have noticed after chemo just how quickly you go red in the sun so it’s been “hat on” all summer and autumn so far. The surgeon gave me the very good advice to protect your head as much as possible as your head and face are much harder to operate on than arms and legs.
So lastly whilst I’ve had the Flu jab as I’m Neutrohils >0.5 I am waiting to catch up on all my other innoculations (see the CLLSA web site link in Nick’s post above) but there I’ve been advised it is best to wait for my ALC lymphocyte count to rise >1.0 which I think could be some time yet.
I’m in no rush for the Lymphocyte count though, as once that starts to rise I could be on the path again towards 2nd line treatment.
What else has happened since treatment of a non medical nature?
I have continued to work, and have to thank everyone there for their support.
One issue since treatment I have really struggled with is starting to drive again, after a long period during the chemo of no significant driving in heavy traffic, and no driving at all when the Hb was bad, waiting for the transfusions. Even after treatment I found the mechanics of driving were generally unchanged (e.g.the legs are still well good enough from the hospital tests). Traffic levels seemed to have increased, as always, and I was convinced that with no action or change I was in for a big accident, so something had to be done.
Now you can, and should go to medics and ask them to check if you are fit to drive. Whilst there are lots of aspects they can, and should check out, they aren’t experts at driving.
From something AussieNeil said to me, that set me thinking. Very luckily from that I plucked up courage to join my local IAM (Institute of Advanced Motorists) group, and was very pleasantly surprised in all respects:
I’m not sure these days if the name “IAM” is the best choice, I’d probably have “survival” in the name somewhere, but the organisation needs continuity. Think of it more as simply how it all started; a bunch of local friends who all had a common interest in improving their driving. So follow the link on the site to “Local Groups” to find your contacts, and under the link of courses available, see “Free taster sessions” to get started. What have you to lose? I’m guessing that other countries may well have similar organisations if anyone can enlighten. If not I’m sure you could start one, and IAM would I guess help.
All that has taught me, and left me quite shocked at how much the driving test from 30 odd years ago didn’t teach you. It’s somewhat better now I think, but IAM (also ROSPA) can teach you a lot more than you might think.
No I haven’t passed my test yet, but it’s all about keeping trying to improve to keep up with the ever changing world. Of course the future seems to be autonomous vehicles . . . my first thoughts about those were not at all good, but on reflection, one day they’ll be taking people to hospital for treatment, safely. Lots of work to do there first.
Picture: I’ve just been on Holiday in September as usual in this area. See if you can guess the Lake. The foreground just here is not so pretty and reminds me of the effects of the FCR. In the distance though you can see what you are looking forward to. Just need to be patient.
Lastly I have to thank my wonderful wife for putting up with me, and getting me through all this. She has also been for the flu jab (thank you), which as I read is recommended for CLL partners, but down to the discretion of the GP.
Thanks you all for all your posts and help, and best wishes to you,
P.S. Please let me know any horrible errors in this post and I’ll do my best to sort it out.