As I reported in recent post about my bloods for the start of round 2, I got into problems with the anti-sickness medication for round 2, and despite trying to analyse what I did wrong in round 1 actually managed to make things worse and ended up in my local hospital to get sorted out. I've been back at home for about a week, and feeling pretty good now.
My fundamental mistake I think was to over analyse the limited information I had from round 1.
Anyhow, this is what happened in round 2:
I started being sick at the end of day 3, this becoming uncontrollable at the end of day 4, then admission to my local hospital on the morning of day 5.
I was probably unable at any time to drink the 2.5 L of water per day minimum, due to the feelings of sickness, and the feeling of backing up in the stomach (We have heard a figure of 4 L recommended but don’t think I could ever get near that while on the chemotherapy. I would have to be physically working hard to be able to drink that much.)
If you remember from round 1 my two anti-sickness meds were Ondansetron and Metoclopramide. My first mistake I think was to stop taking Ondansetron after being sick for the first time (as I incorrectly associated the requirement for Ondansetron to be just to control the Nausea inducing side effect of the day 1 Rituximab). The last dose of Ondansetron I took at 18:30 was just 10 mins before that first sickness episode, which would not have given time for it to act. So I should perhaps take my second Ondansetron dose of the day earlier at say around 16:00.
On day 4 the uncontrolled sickness started 1.5 hours after the 4th set of Fludarabine and Cyclophosphamide. With hindsight I think I made the following mistakes:
a) I only took Metoclopramide that day, no Ondansetron at all having stopped the day before
b) I only drank x1 glass ~200ml of water to take both sets of the Chemotherapy tablets (should have been one glass each)
c) In the 1.5 hours after taking the Chemotherapy I failed to drink any further (feeling sick) but sat there looking at a cold cup of tea, and trying to distract myself writing an email (which did work for a while, but I never managed to press the send button)
Before admission to hospital I did go to see the GP for an emergency appointment. I was given a subcutaneous shot of Metoclopramide, and prescribed a new medication Cyclizine. The hope was if the shot of Metoclopramide could stop me being sick for a few hours then I might be able to switch to the oral Cyclizine. It was a good try but unfortunately I kept being sick so wasn’t able to try the Cyclizine before I was admitted to the local hospital the next day as an emergency case.
During the period of repeated sickness before admission:
a) I didn't make any attempt to take the Cyclizine tablets I had from the GP (as in my mind the 1 off subcutaneous dose of Metoclpramide failed to get me in a position to do that)
b) I was only able to drink small amounts of water to ease the repeated sickness process so was probably becoming more dehydrated
c) I failed to attempt to eat anything e.g. plain biscuit to see if that would settle the stomach (I won't forget that trick again)
Once in hospital taking the anti-sickness meds one at a time by IV, with Cyclizine in the morning, and then Ondansetron in the afternoon when the greatest issue seems to occur, I was able to more clearly understand & learn the effects of the meds with the faster acting nature of IV and with only one anti-sickness agent taken at a time.
So the evidence from round 2 seems to indicate that Metoclopramide does not work sufficiently well for me in oral (or subcutaneous) form, even taking x4 doses per day orally. That could still be to do with absorption levels and rates though. I note I've never taken it by IV so can't clearly identify my issue with Metoclopramide, but I have to move on.
In my case Cyclizine seems to be a reasonable substitute for the failed Metoclopramide, although the action may be different and I haven't proved it yet when taken only orally through a whole cycle. I have noticed (for the first doses) side effects such as stammering (did not get that with later doses - oral or IV so could have been my state of health at the time)
One bit of a worry I did have, the cannula went in my best emergency vein in the left elbow. For the antibiotics we have to take as part of the FCR treatment the normal Septrin tablets were switched to IV Tazocin. Now Tazocin is only available in IV and as a 5-day course so I did have concern that I would be kept in to finish the course, and the same cannula left in for that time. Fortunately agreement was reached that I had no evidence of any actual infection so the cannula removed, switched back to oral antibiotic Septrin (Co-Trimoxazole), and I was discharged on day 7 of round 2. That was a big relief.
I can report that the local hospital staff were very aware of the compromised immune system nature of CLL patients, and I was rapidly moved to isolation rooms, once the drips were in, so full marks. Neutrophils were measured at 0.34 so I think I do have to be careful.
I've always worried about long emergency admissions via A+E (from experiences in the past with the tonsils) but this time my city CLL specialist hospital I was in touch with throughout all the above arranged my admission to the local hospital via an Emergency Assessment Unit special ward, so no need for A+E worries which was a great relief.
One other interesting point I noted whilst in hospital on IV fluids my normal level of Nocturia of ~4 -> 7 times per night was well controlled to just one visit to the bathroom, of large volume. So perhaps I should drink through the night (but not sure if the stomach would agree with that). I will also have to see first how I am with that issue after the FCR treatment.
So I am now hoping I should now be able to perform the next round of treatment with a mix of Cyclizine and Ondansetron taken orally, and I note the words on the Ondansetron packet that it is for both Nausea and Sickness.
I'm also now confident that if I do get an actual infection in one of the later rounds of FCR that my local hospital is as competent as anywhere to sort me out.
Fingers crossed for FCR round 3 then.
So time now to enjoy myself first, and get back a little fitness.
Best Wishes to All,
P.S. Haven't generally had frogs in the pond for years, it having been taken over by newts. Friends came to see us with small children hoping to see the newts, but surprise surprise, Jeremy Fisher also popped up and had his photo taken.