Well I'm at home today on day 23 of a normal 21 day cycle, I've been a bit lax on writing but there have been reasons. So let's go back to Day 1, 22nd May, sounds like a long time ago.
The day started with a visit to see Tony whom I hadn't seen for quite a while. You may recall I was waiting to find out "what next" well the meeting was very useful and has given me that direction and focus, which has relieved some of the mental stress I was putting myself under!! The immediate plan was to get through round 8, have a good break, cos there's no more chemo, then late June a PET scan, which Tony will review on 3rd July at our next meeting.
Whether we proceed to stem cell transplant or not will depend on the outcome of the review. Interestingly there is little documented evidence to say that doing the stem cell transplant increases the length of remission if actioned immediately, hence there is a view that you could be using 2 arrows from our small quiver of arrows for one remission, or you can save the stem cell for a potential second remission. It's all very confusing and an area which you have to leave up to the experts. We are positioned well with a good stem cell harvest in the bank.
After my meet with Tony it was off to day oncology for the first chemo - Rituximab / Mabthera - which appears to be one of the wonder drugs in treating Lymphoma's as well as other cancers. Remission rates appear to have increased since the addition of this drug to the protocol, now making it R-HyperCVAD. Following the Rituximab the main B cycle Hyper CVAD drugs started, I'm given methotrexate continuously for 24 hours, and this is repeated on the next day.
Then Cytarabine is given twice (12 hourly) on the second day and also on the third
day. This all pans out as complete for me on the Friday morning due to the late start on Tuesday. If you read the protocol for the treatment it says that you can go home at this point if your methotrexate levels are ok.
Well to be honest on the Thursday and Friday you are lying on the bed doing nothing, eating probably breakfast only and even thinking about food can be nauseating. I've found the B cycle mucks around with my body temperature which it did again on this occasion, however as soon as you hit 38deg alarm bells ring and testing begins for infections. Well the testing here included Dr. Whitby the infectious disease specialist. After a couple of days on antibiotics, he stopped the antibiotics and gave me a couple of tablets and said that if my temp didn't spike in the next 24 hours, it would not be a bacterial infection & would be chemo. related - which of course was the outcome. So I escaped from Ward 31 on Sunday and came home.
The following week was quiet initially, I got a blood test on the Monday and went in for platelets on Tuesday at which point I was neutropenic, which was relatively early in the cycle (day 8). All was well til Thursday afternoon when I got a temperature measured at home at 38.4deg. This meant a trip to the Emergency department again where the home thermometer's accuracy was shown up, 39.4 in hospital 38.7 on the home machine - better remember that for the future. This time I had an infection and received X-rays and antibiotics in the ED. I spent the night in the ED, not the most comfortable of nights but ok, there were literally no other beds available in the hospital. The next day I got up to ward 31 just after 11am and was hooked up to constant saline and periodic antibiotics, with blood cultures being taken to find out exactly which infection I had. This takes a couple of days and resulted in modified antibiotics for a few days. So by Monday the infection was under control and then I spiked another temperature! This time due to some form of virus - great!! More swabs and so forth, although no real change to any treatments - the best result for the virus was for my blood counts to recover! Finally bloods recovered on Thursday 7th June with neutrophils triggering the magic 1.0 target at a fantastic 1.46 yippee just some platelets to receive and then hopefully home! Of course there is always a sting in the tail - yep you guessed it I reacted to the platelets. Luckily they let me home last Thursday and I was under strict instructions from Liz to relax at home for a few days and keep myself to myself - yes dear!!
So next update will be after the PET scan and meeting with Tony. Thanks for following the blog and thinking of us all.
Alan, Liz, K,H,K
