FLAIR Trial – ErnieUK: Red and White Cell Cytopenias before round 3 FCR

[Ernest2]

I’m happily into round 3 of the FCR arm of the FLAIR trial now, with a couple of hiccups on the way.

As always please correct me on any errors/omissions and please share your own experiences.

I have had problems in round 3 with both Red Cell and White Cell Cytopenias i.e. Not enough of these cells.

The white cell issue was not too difficult to solve because with Neutrophils = 0.66 (1.0 is the minimum allowed to start treatment) I was simply delayed a week and put on self-administered G-CSF injections to achieve an increase up to 13.16 as shown in the table here. That seems rather a high figure, and I’m not sure if that is due to overdoing it a bit on the G-CSF or some other cause e.g. minor infection I didn't notice.

_______________NOV____DEC____JAN____FEB___Units_______Normal Range

Hg___________10.6____10.8____10.4____8.3_______g/dL_____Normal 13->17

RedCell______3.79____3.78____3.55____2.75____10^12/L___Normal 4.5->5.5

WBC_________256_____303_____4.4____15.2_____10^9/L____Normal 4 ->11

ALC__________238_____282_____1.9____0.92_____10^9/L____Normal 1->4

Neutrophils__10.25___12.13___1.6____13.16____10^9/L____Normal 2->7

Platelets_____110_____133_____184____132_____10^9/L____Normal 150->400

G-CSF can have many side effects e.g. bone ache, but the only one I could attribute to my 7-day course was a dull headache for a couple of days. I’m doing the same course again in round 3 but a week earlier in week 2 of the 28-day cycle, starting on day 7 (so any sickness feelings from the chemo are out of the way by then). So I’m glad to say I’ve now completed the G-CSF ready for the next round. The injections are into the stomach area, and are not painful e.g. nothing like a blood test (it is good if you can “pinch an inch” in the stomach area to inject the G-CSF, so I’m glad I have now put a little weight on which invariably appears instantly around my middle, rather than hiding my thin arms and legs . . .

Now for the low Red Cells problem which you can see in the Haemoglobin and Red Cell figures above. I’ve obviously been running low for some time but happily living with that. I’d noticed before I turned up for round 3 that my head had been pounding a bit with my heartbeat e.g. after walking upstairs. Still I was somewhat surprised, until I engaged brain, to be told my red cell count was low. The other thing about it I got wrong in my mind was it must have been the effect of the round 2 treatment. Reading about red cells though they have a lifetime of 100->120 days so I guess you could go through the round 1 treatment where the chemo might suppress the Red Cell production and not notice for some time until the cell numbers started to dwindle.

From reading, it sounds like about 40% of people get the issue with the Red Cells, so I can take comfort in that. More of a worry might be much more serious Autoimmune Haemolytic Anaemia (AIHA) where about 10% suffer. Fortunately my spleen does not seem to be expanding, in fact I can no longer find it sticking out below the rib cage, so I’m hoping I’m ok on that one at the moment.

Now I think you can get drug treatment to increase red cell production, reading about erythropoiesis-stimulating agents (ESAs), but with risks involved in those I’m assuming a blood transfusion is a lower risk alternative, and ESAs were not suggested to me.

So what was the blood transfusion like? I’d seen a few others during previous rounds of treatment, but didn’t guess they might be CLL patients. So now my turn. I remembered before I went, that many years ago I used to donate blood. I assume you can’t pass on CLL from a transfusion, and that was a long time before I contracted CLL. My blood type was A+, as I’d remembered.

I had mixed feelings beforehand. A transfusion is a part of treatment like no other, not being based on manufactured drugs, but relying directly on the generosity of others to make donations. I find that very humbling.

How’s it gone since then? I have been concerned that a little of the pounding in the head and shortness of breath returned within a few days, however it is at a much lower level than before the transfusion, when I was starting to get into difficulty.

I tested out the transfusion a few days later, with a couple of days gardening. I probably overdid that on the first day, in my excitement, and got a bad return of the good old night time leg cramps after the first day. Second day I was more careful to look after the legs in the evening e.g. stretching etc. (see previous posts) and had no re-occurrence at all (so my advice is to look after them).

I don’t know if there is any research available on this, but I have wondered if leaving treatment as late as I did increased my chance of needing a transfusion, and I’m guessing that I’ll need more of those, although I’m told there is no hard and fast way to predict that. I don’t regret my choice to leave treatment till late but I would want to think about it if I was going round the loop again in future e.g. 2nd line treatment, that I’m currently expecting one day (unless my prognostic factors change – which is possible).

One other observation, and sorry this is unpleasant, but I have experienced bad IBS-type symptoms from the start of round 3 (I have wondered if that is anti-emetics, Chemo, Infection, Low Red Cell count, G-CSF or a combination of any, or none of these). From memory, that actually started the day before treatment, so perhaps infection plus the effects of the treatment is indicated. Modifications to diet (Neutropenic considerations) and trying to put weight on probably haven’t helped (I can report with relief that my weight increase is successful). So I perhaps need to go back to a diet that might humour the IBS a little more to see if I can get that back on track. I can live with it though, if it remains until the end of treatment. I compare this with the 2 previous rounds, when I just had an upset digestive system for a couple of days in the middle of the chemo part of the treatment (just took that as fisherman’s revenge from the FCR).

Great thing I can report from round 3 is the anti-emetics change from Metroclopramide to Cyclizine (and taking 7 days of Ondansetron, x2 tablets a day 8 hours apart) did the trick for me. This was combined with a few shortbread biscuits when I felt the start of feelings of sickness e.g. Don’t say “Well I’m eating in ½ hours time”, just eat a biscuit (or two). Please tell me though if you don’t expect to feel sick by round 3 because of the lower cell kill count (lower TLS).

So I've got to enjoy the good part now before round 4, and I hope for some good weather to get outside as much as I can at the weekend – that always seems to make me feel better – I wish I understood all the reasons for that.

Best wishes to all,

Ernest

[AussieNeil Administrator]

Thanks once more for your detailed and most informative account of your experiences Ernest. I'm fairly certain that you are the first to describe in such detail the process of having a blood transfusion, which will be of interest to many. I wonder whether there'd be a welcome increase in blood donors if the public knew that cancer patients are the major recipients of donated blood and its products, like IGIV? That alone requires several thousand donations for just one infusion. So yes, it is very humbling indeed to recognise that those of us dependant on monthly IGIV to keep us healthy are reliant on around 30,000 blood donations a year, often freely given!

You've highlighted the importance of not leaving treatment too late too. If you ask your specialist, I'm certain you'll be told that yes, doing so increases the likelihood of you needing blood transfusions and the associated risks. Interesting observation you've made too about how long your red blood cells last and what triggered your eventual drop. Yes, the different blood cell types all have different lifetimes and by knowing them, your medical support team know when to monitor and intervene where necessary.

When I saw how low your red blood cell count and haemoglobin had fallen, I wondered how you were managing. You should have been experiencing fatigue, pallor, shortness of breath, dizziness and any lower would have put you at risk of tissue damage from lack of a sufficient supply of oxygen. So good to see you are being well looked after, but don't overdo it. (Easy to say, not so easy to avoid when you feel so much better eh?).

So you're half way through! That's got to feel good achieving that milestone and I hope that you do get that good weather so you can enjoy the time before round 4 comes along.

Look after yourself,

Neil

[Ernest2 in reply to AussieNeil]

Many thanks Neil.

I can say on the Hg levels above that I really wasn't feeling too good. Probably I always look fairly pallid at this time of year but I'm sure more than normal.

The thumping heart e.g. after walking upstairs, tends to pull you up short and forces you to rest a minute or so, so strangely you can't get much out of breath (I haven't tested that out).

I was allowed though to do the round 3 chemo first and then have the transfusion the following week, so not sure what my Hg actually was by the time I got the transfusion.

Sitting down though e.g. at PC, I felt OK.

I think now with the transfusion over a week ago I'm starting to notice the effects again, so fairly sure I'll need another transfusion in round 4, unless things make a sudden unexpected change.

Surprised to be half way through already. I've always assumed this is where things might get tough, so relieved to be doing so well at the moment.

I did get outside all day in some really nice sunny weather on Friday, yesterday not so good but still glad to get outside for a few hours and potter round and do a few jobs. Always feel better when I'm outside and wandering around.

Kind Regards,

Ernest

[PaulaS Volunteer]

Thanks for the update, Ernest. I'm always interested in the down-to-earth details of people's CLL experiences. Everybody is so different.

I hope the weather's good, so you can get out this weekend. I agree that it always feels better to be outside...

Wishing you all the best for the future,

Paula

P.S. I'm trying to see if I recognise the scene in your photo... Is it somewhere in the Lake District?

[Cammie in reply to PaulaS]

Ernie,

In respect of the IBS symptoms discuss with your consultant as it appears my problems I have posted may be from the gut? I experienced terrible flatulance and heartburn after round one. I did report it but nothing was said.It now appears there may either be a fungal infection in the gut that is causing my fevers or the so called good bacteria is not so good at the moment!

Glad to hear things are going pretty well for you better than being stuck in hospital like me mate.

[Ernest2 in reply to Cammie]

Hi Geoff,

First please accept my sincere apologies for slow reply, I've been grabbing my opportunity to get outside whilst things are good with me (and the weather).

Really sorry to read about your Neutropenia, gut infection and stay in Hospital. The Neutropenia is hopefully improving with the injections. Guess the gut problem may take a little longer to sort out. Puts my minor hiccups of problems in the shade, and makes me feel very fortunate.

Get well soon,

Ernest

[Cammie in reply to Ernest2]

Ernie

Seem to be on the mend thanks hopefully will get home tomorrow

[Ernest2 in reply to Cammie]

That's good news. Best of luck with the escape.

Ernest

[Ernest2 in reply to PaulaS]

Thanks Paula, good to hear from you.

It was great to get out this weekend.

For the picture thought I'd try to make it a little more challenging.

Yes it is the Lakes, on a walk from Skelwith bridge up the side of the valley then over the top a little and down to Ambleside for refreshment. An reasonably easy walk (compared with the big Lake District hills), with the relatively gentle up and down again to return home. The view is looking back in the direction of Skelwith Bridge and Langdale, so the Pikes should be in the background, although perhaps not the normal direction they get viewed in.

Kind Regards,

[PaulaS Volunteer in reply to Ernest2]

Thanks for explaining where the photo was taken from, Ernest. I though it looked a bit like the Langdale area, but couldn't quite place it. Such a wonderful part of the world...

Best wishes,

Paula

[Graham2222]

Just to say thanks, Ernie, for a great post which I am sure will help other readers. And good luck for the next round. Take it easy!

[Ernest2 in reply to Graham2222]

Many thanks Graham.

Hope things are going well with you on the IceCLLe trial.

[msuteg]

I am also doing FCR, though not within the trial. Our numbers are quite similar, as well, although my red counts have not bottomed out like yours. I get a shot of Neulasta on day 4 of each series. I've been reflecting today about your comments (and others') regarding IBS and other issues, and what got me thinking about this was your comment about shortbread. I am not eating at all as I used to, and I don't think any of us are. My body wants protein, fats, and sweets...and there are a couple days when I don't want much of anything. I suspect a lot of the intestinal issues are related to an abrupt change in dietary habits while under chemo. Just a thought. I'll go put the shortbread in the oven 😄

[Ernest2 in reply to msuteg]

Thanks Msuteg.

I think you are right on the diet.

I changed mine somewhat during treatment in order to reverse the weight loss which has been successful.

just this week I've changed back a few meals, well breakfast to be honest back to IBS choices and that seems to have improved things (unless it is the extra sleep at the weekend). My IBS breakfast is boiled rice and chopped up green beans, then gently stir fried and chucked on top of a chopped up omelette, with a little soy saucery for flavour. I time the rice/bean simmering by doing stretching exercises for my back (so its good for that too).

I don't care to be scientific there and reverse that diet change to prove I'm not imagining it all (also you can't smooth out the cycles of chemo).

So it is whatever works wins the day, even if it is all in my mind.

Many thanks, and keep letting us all know how you get on with the FCR.

Ernest

[wroxham-gb]

Great that you,ve posted your latest treatments and the outcomes in such detail. I'm sure we are all learning from your posts. You are so positive Ernie.

My best wishes

Sue

[Ernest2]

Thanks Sue.

I'm sure everything in my posts isn't optimal in terms of best understanding of the issues, but HU allows us to share our misunderstandings, and get to a better place.

So hope folks will correct me when I blunder, and/or look in the wrong direction.

Strange sometimes you subconsciously know when your thinking is wrong, but only someone telling you switches the brain in the right direction.

We are in for a long ride with CLL, on a journey we didn't chose to take. Everyone on HU showed me that positive thinking is the best way to get through it all, even when things are not as good as we would like. so thank-you all.

Best wishes everyone,

Ernest