Well I’m glad to report I’m finally into the R&R stage now of round 4, and Spring seems to have finally arrived just in time for Easter.
As always please correct me on any errors/omissions and please share your own experiences.
So how did round 4 go? Well, similar problems to round three to start with.
On the day I arrived at hospital to start the round 4 FCR treatment in March I really felt I was turning up for the wrong treatment. In my mind I needed a boost first, not more FCR. I did struggle to walk from the car to the hospital door.
Results proved the thinking in the back of my mind, with red and white cell count problems again. For the Neutrophils I was surprised as the G-CSF injections I’d done just after the round 3 chemotherapy didn't give me the same apparently large boost as before, so the results came out as.
-Hb = 7.6 (too low)
-Neutrophils = 0.67 (Need >1.0 to start treatment)
I was tested for iron levels, but those were normal, so the solution as round 3 was another blood transfusion to increase the numbers of red cells, and for the Neutrophils, to simply delay the FCR a week for the cells to increase in numbers.
I had wondered what the best strategy is for the G-CSF injections and wondered if spreading them out a bit more might be beneficial, but the theory is to administer them one a day starting just after chemo, when the Neutrophil count is at its lowest and hence the G-CSF benefits will be the greatest (I could still imagine compromise strategy scenarios though).
For the transfusion I didn’t get as many units of blood this time, so fine to start treatment, but feared the benefits would not last until the end of round 4.
So the following week I had to get all the bloods retested on the 1st FCR day and with great relief the Neutrophils just squeaked in at 1.02.
Here are my results then on the day of starting round 4:
WBC_________256_____303_____4.4____15.2___1.65____10^9/L____Normal 4 ->11
Aside: I’ve changed the Haemoglobin units in the table from g/dL to g/L now (compared to previous posts) so all the numbers get ten times bigger.
Good to see the platelets are now in the normal range.
So started round 4 FCR on the day of the above results.
The Fludarabine and Cyclophosphamide dosage were both reduced as I’m struggling in the bone marrow department to manufacture red and white cells:
-Fludarabine from x5 to x4 tablets (10mg each)
-Cyclophosphamide from x6 to x4 tablets (50mg each)
I guess that dosage is not likely to increase again in future rounds 5 and 6. Apologies forgot to ask about my Rituximab dose, as I happily sit there whilst that is done for me (I’ll ask next time).
Nausea and sickness were well controlled for the round 4 FCR now I’ve learned the warning signs, and have the biscuits handy. See my round 3 post for that:
My snag in round 4 hit me on days 4 and 5 of the chemo. I knew I wasn't drinking enough. That sounds really easy when you are feeling well, but the effects of the chemo tend to be a vicious circle, that gets worse as you drink less. My stomach felt like if had shrunk to the size of a ping pong ball, so eating and drinking just a small amount instantly makes you feel full. I really didn't think I’d manage to take the day 5 chemo pills but somehow just managed it. I did remember the “full glass of water” with each set of the chemo pills though so managed to keep them down. Anyhow, any good ideas on the hydration, and looking after the stomach would be greatly appreciated. Decided to make smaller cups of tea rather than look at a very cold small one. Also been eating very nice home made soup from the very dedicated one who is looking after me.
Have wondered if I should start drinking overnight during those bad periods at the end of the chemo period, but I can’t think of the best thing to drink, as it obviously needs to be a stomach settler. I’m probably up about 4 or 5 times in the night anyway to visit the bathroom, so if I did try that strategy I would not need to drink a large volume each time.
It does make me think of course of the possibility of doing all the stuff, including the hydration by IV, but of course that is not a cost effective solution, also the risks of being in hospital with a low Neutrophil count could be very counter productive.
The “stomach shrinkage” did fortunately get better in a couple of days after the chemo ended.
After the five days of FC chemo, had a one day break, then started the next set of self-administered G-CSF injections for seven days. Didn't get any bone ache, just the dull headache as before, and a continuing upset digestive system.
Had similar problem to round 3 with the digestive system.
Please skip to the end of this post if you find this unpleasant. The form of IBS I have now during treatment I’ll describe as mixed/simultaneous. That doesn't seem to leave you anywhere to go with a workaround solution, except perhaps a healthier diet, which the Neutropenia somewhat dictates against.
Thinking about it though I've had:
-1 week of chemo/effects of chemo, which I think is accepted may upset the digestion
-1 week of G-CSF injections which again I think can upset the digestion
-1 week of low red cell count, which I wonder might also upset things (haven’t found a good reference for that yet for FCR patients)
Anyhow the best solution I've found so far, after trying various others that didn't work, is powdered Ispaghula husk that you mix with water, and drink after each meal. PM me if you are not sure of Trade names for that. I’m still experimenting with the dosage. It does also remind me of my father, another CLL patient, who also took these at one time, although I can no-longer correlate that to when he had CLL, and CLL treatment, such as that was in the 1980’s (Oh for a Tardis and some supplies of Rituximab etc.).
Please let me know for the digestion if you have found any better solutions, thoughts / ideas.
Anyhow if that is the worst problem I have, then I think I’m not doing too bad at the moment, and count my lucky stars.
Also finally hit it lucky and, with a pounding head again, got another 2-unit blood transfusion just before the Easter weekend, so have been out enjoying myself in the garden, and catching up on stuff I couldn't do over the past few weeks.
Happy Easter and Best wishes to all,