FLAIR Trial – Experiences post FCR – Recovery ... - CLL Support

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FLAIR Trial – Experiences post FCR – Recovery from Red Cell Cytopenia and Neutropenia

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:

healthunlocked.com/cllsuppo...

. . . 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):

healthunlocked.com/cllsuppo...

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:

healthunlocked.com/cllsuppo...

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:

en.wikipedia.org/wiki/Haema...

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):

_____________DEC14__JAN15__MAY15__JUL15__AUG15__APR16__JUL16__Units___Normal Range

Hb___________108____104_____75______66______121_____162____153_____g/L_____130->170

WBC_________303_____4.4___12.56____1.43____1.28____1.15_____2.7____10^9/L____4 ->11

ALC__________282_____1.9____0.21____0.17____0.14____0.33____0.35____10^9/L____1->4

Platelets_____133_____184____127____104_____111_____167____146_____10^9/L___150->400

Neutrophils__12.1____1.6____11.8____0.94_____0.79____0.11____1.85____10^9/L____2->7

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:

iamroadsmart.com/

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,

Ernest

P.S. Please let me know any horrible errors in this post and I’ll do my best to sort it out.

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Ernest2

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17 Replies

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AussieNeilAdministrator8 years ago

Hi Ernest and thanks for that very informative, interesting (and admittedly at times scary) post about your experiences during and post treatment. Very relieved to hear your patience has at last been rewarded.

Wishing you a long and boring remission ,

Neil

Ernest2 in reply to AussieNeil8 years ago

Thanks Neil. I'm happy to be bored as long as possible by the remission I get. Hopefully all the tips here on HU might help me make it as long as possible

wroxham-gb8 years ago

Good news Ernest. May your wife and yourself have a lovely trouble free remission.

Sue

Ernest2 in reply to wroxham-gb8 years ago

Many thanks Sue. I think you make a really good point, because I think in a lot of ways CLL is more difficult for partners/carers than those that have to put up with it directly, and I have to keep saying a big thanks to my wonderful wife for getting me through it all. You will note above I say I still work, and I've only been able to do that because of all the support I get.

Ernest

PaulaSVolunteer8 years ago

Hi Ernest

Great to hear from you again. Thanks for sharing in such depth, about your CLL journey. I remember some of your problems while you were having FCR, so it's been interesting to hear about the ups and downs afterwards. I'm full of respect for your patience and positive attitude to it all.

Sorry to hear about the basal cell carcinoma - what a relief that your neutrophils are now recovered, so it can be dealt with.. Good reminder about protecting our heads from the sun not just arms and legs..

I could relate to your problems re starting to drive again, after a time of illness. After my surgery a year ago, it took me a long time to regain the confidence to drive again, especially in fast busy traffic... As you say, the traffic did seem to have increased, and was going much faster than before.

The traffic still is going faster... I feel that my reflexes have slowed down - not just in driving, but in conversations. I take more time to think things through and to respond. It's OK writing because I have time to think at my own pace, and not be rushed by quick conversations.

Interesting to hear that you've joined an Advanced Motorists group. Good to find ways of "keeping up with the ever-changing world". as you put it.

Also interesting that it might have been the stimulus of your cold and fever, that prompted a good response from your neutrophils - kicked them into action.

I've been looking at the photo and trying to work out where it is... Remembering where you've been in the past I presume it's somewhere in the English Lake District? Maybe Coniston? I feel I should be able to recognise those hills, but I can't place them... (Maybe a sign of my post-surgical brain fog). I get your point about the foreground not being so pretty (like FCR), but the distance being what we look forward to. Very apt.

Wishing you all the best for the future ,

Paula

Ernest2 in reply to PaulaS8 years ago

Many thanks Paula.

Don't worry about the BCC, I think its fairly trivial and has been happily sitting on my shoulder for over 6 months now. To identify a BCC I understand you have to be able to spot the pie crust edge which needs magnification and an expert view in my case. Thought I had another on the back of the arm, but just had it checked out by specialist GP and its hopefully not related. So that convinces me to always ask and not try to guess.

The trick with the driving, is looking further ahead, to the side, and in the mirrors, as far as you can see (and using your imagination to think further). That way you give yourself the thinking time to be out the way, or have a contingency plan when that bike does swoop round the corner . . . The hard bit is to keep doing it for an extended period.

I know what you mean about not wanting to be rushed, which doesn't feel like it helps. I think CLL has made me a bit stubborn in that way.

You are right on the lakes. I'll PM you in case somebody else fancies having a guess. I suppose if you are an expert at the big hills (I just have to look from the valleys) you can perhaps work it out. I'll give one clue though - I had been on a walk, but not from where the photo was taken.

Ernest

Cammie8 years ago

Ernie

Great to see you back posting and very pleased you are now getting back to fitness.

As you have pointed out the FCR journey can carry on after treatment particularly as Rituximab continues to work for around and up to 12 months in some.

I have to say I have been lucky so far after finishing treatment in March 2015 but still have the off weeks where I feel like I don't want to do anything. However, my golfing buddies and granddaughter soon make sure I come back to the real world ASAP.

I think it's important to do carry on with exercise and I've seen several posts recently supporting this in post treatment patients.

Your BCC is not uncommon I had one off my back this year also.

Here's wishing you the best old friend keep us informed.

Geoff

Ernest2 in reply to Cammie8 years ago

Many thanks Geoff.

Worst case figure I managed to coax out of the fantastic team at the hospital was 18 months, and I am glad they don't tell you that until you do a bit of arm twisting. Think I got up to somewhere around 14 months. It was well worth the wait though, and I've been really luck with lack of infections.

Certainly with the stiffness in the hips I've got moving around is the key. Just hoping this coming winter that my feet don't object to the cold as much as last winter - whatever I'll just have to buy the other snow boot if its a problem . . .

The BCC are I think just a feature of CLL, but do I hope remind everyone to be careful in the sun. The sensitizing effect of chemo to the sun is significantly noticeable, although I don't know how long that is meant to last.

Ernest

HJ_28 years ago

Hi Ernest, I had been wondering how you were doing after your FCR so thanks for the update. Sorry to hear that it hasn't been plain sailing for you but I'm glad you were still able to enjoy your holiday in my neck of the woods. Wishing you all the best for your bcc operation.

All the best

Helen

Ernest2 in reply to HJ_28 years ago

Many thanks Helen. it was definitely one thing that kept me going through treatment to keep those views in mind and quite surreal to actually make it there, and with fantastic weather.

Ernest

mehall518 years ago

Hi Ernest;

Good to hear you are finding your way out of the woods. I completed FCR in JUly 2015 and like you it was made some much easier with a loving supportive partner. Good luck with the Op.

Michael

Ernest2 in reply to mehall518 years ago

Many thanks Mike.

Interesting to read your posts.

Hope the pins and needles you have in the arm aren't too bad now.

I was told to possibly expect the bone ache, but I understand from physio that the hip issue I have is bursitis. I'm guessing it just doesn't recover as fast as for a fit healthy person with the effects of having had FCR.

Anyhow last night I got the ice pack out again and that did improve things as before. Cycling has been suggested to improve the circulation, and something with a smooth movement. A very long time since I've had a bike.

Hope things are improving for you.

Ernest

mehall51 in reply to Ernest28 years ago

Hi Ernest, it seems that having completed chemo we are now dealing with the minor complaints. I have ongoing appointments trying to track down the pins and needles, I am now with neuropathy. Lets hope we can progress to being fully fit for a while before the return of CLL. Excuse the broken reply but working from my mobile. All the very best for now. Michael

mehall518 years ago

Hi Ernest;

Why not try a static indoors bike, certainly safer than competing with road traffic. Regards

Mike

Ernest2 in reply to mehall518 years ago

Hi Mike,

Funny I used to have a static bike years ago, and swapped it for a rowing machine. That's now in the garage and the room is now an office where I worked all through treatment and when I work odd days at home. Suggestion from the physio is swap the rowing machine for a bike.

Funny though - on my bucket list (if I've got such a thing) is to row down a river one fine day (I can hear the ducks laughing now). It will need others in the boat.

Now I was thinking of getting a road bike and a set of rollers you can clamp it to, and see how I get on. I won't be riding on any roads, as to me its just way too dangerous where I live, and I've got several friends who have suffered very bad accidents.

Sorry I meant to say (its probably buried in my posts somewhere) that I had pins and needles in the feet both before treatment and now afterwards. Funny thing is it went away during the treatment although I can't remember exactly how long for. The Neurologists I saw (before and after treatment) were not keen on toxic chemo treatments with the risks to nerve damage - no choice though on a drug trial (FLAIR is FCR vs Ibrutibib/Ritux).

Anyhow the pins and needles are still there but with no way to measure them I can't say one way or another if they have improved a bit.

The main thing is the neurologists have done all the pin prick / hammer reaction / standing on one leg tests etc. etc. and say from the Neurology point of view my legs are fit to drive. That said I did switch to an Automatic car in about 2012 (help from my wife who has been driving them a bit longer than me). Warning to anyone thinking of changing Manual -> Auto, do it sooner rather than later, they do take time to learn to drive well, and there are endless different versions now from different manufacturers.

Thanks again, and please keep posting.

Ernest

mehall518 years ago

Hi Ernest;

The cause of pins and needles is baffling. Haematology says definitely not FCR or GCSF. Conductivity tests say pathways are okay, CT and MRI scans say the body is well worn but no trapped nerves visible. All thats left is neurology but I wont see them until Feb 2017. I will live with it, as its more nuisance than disabling.

I have been driving automatics ever since we got a caravan in 2011 and i wouldnt go back. Much easier to drive than manuals, just a bit slower away from the lights.

I have a static bike (nowheels) but it rarely sees any use, I just hang things on it. It can ohld quite a few hats...

Good luck with everything.

regards

Mike

HAIRBEAR_UKFounder Admin8 years ago

Hi Ernest thanks for sharing your story with us, great to see you able to post and that everything has settled for you and life is in full swing. this post is very helpful and a reminder to us all that for some it can take a little time for the body to recover and counts to rally after FCR. particularly sobering for my own thoughts at the moment, i have been off the post button myself for a while you have inspired me

Many thanks

Nick