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