As an engineer within the Nuclear Industry I was used to plans changing and the need to flex plans sometimes to ensure that the ultimate goal is still met with the revised arrangements. This experience has stood me in good stead as I've experienced the ever changing landscape that is "being treated within the NHS". This was particularly true last week as I prepared to take the all important step of moving onto the second drug in my novel Obinutuzamab/Venetoclax CLL treatment.
Monday actually went well. I got to my GP appointment in Newent for my blood test early in the day (this is to give them chance to get the blood to GRH for analysis) and I did a bit a grass cutting. The first indication that we may be having a change of plan came at about 5:30 in the evening when the senior consultant from the haematology unit 'phoned me and told me that my HB level was low again and that he wanted me to have three units of blood in the next two days. My red blood cell count was as low as it had been in April (~55) but I didn't feel as breathless as I had back in April. Nevertheless I was experiencing some tiredness so I didn't argue. While I feared he might say "get yourself into the GPAU tonight" again what he actually proposed was a trip into the Edward Jenner Unit for a bag of blood on Tuesday backed up with two bags at my appointment on Wednesday.
Now you may remember I'd been offered a bag of blood the week before but I'd said I felt OK; moral of the story, never pass up a bag of blood.
Tuesday morning I produced a blog on the subject of challenging YouTube copyright claims. Tuesday afternoon I set off to the Edward Jenner Unit and was soon seated and ready to receive my unit of blood. One of the nurses asked me why I wasn't having all three on one day, and I think my reaction was "because I'll be here until midnight", but in the end we settled on two on Tuesday and one on Wednesday. I had been due to have my telephone consultation on Tuesday but that now became face to face. The main topic of the consultation was getting started on Venetoclax. Plan A had been me take the tablets at home and then come in for a Doctor review on days one and two, Plan B was slightly different as I'd have one dose at home and then be tested after 5 hours and 24 hours and if all was OK allowed to continue with the rest of the course for the first week. However what I learned on Tuesday afternoon was that I had two tumour lysis syndrome (TLS) risk factors, based on lymph node mass and impaired kidney function, and as I result I would take my first dose as an inpatient at the Cheltenham Oncology Unit and our subsequent plan would be based on the results of testing around that first dose. Being an inpatient would allow them to test and monitor me more exactly as well as give me fluids by IV (on top of the 2 litres per day of water I am now drinking) and also Rasburicase to control uric acid by IV rather than the Allopurinol that I was taking in tablet form. The plan was that I would report to Cheltenham Wednesday evening following my third transfusion in the EJU.
I wasn't thrilled at the thought of going back to hospital, but I'd read enough and seen plenty of videos to know that the risks from TLS were real and that this belt and braces approach was very sensible.
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Small but very powerful - the starting dose
©Harveywetdog |
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| How Venetoclax works in theory |
Wednesday morning I received a call from the Oncology Unit at Cheltenham to tell me to report to the Lilleybrook Ward that evening, I walked the dogs in the cool of the morning, packed my bag and headed off to Gloucester just after lunch. I received my unit of blood in the EJU and then my wife picked me up and drove me over to Cheltenham. We found the Lilleybrook ward but obviously I first had to be double Covid tested before I could be admitted. I've said before once you've had a Covid test done professionally you realise home testing is probably ineffective unless you enjoy inflicting masochistic pain on yourself. Once I was given the OK I was processed and admitted through the Chemotherapy helpline suite where I was hooked up to an infusion pump and my hydration started. I was moved onto the ward a little later, I was kindly provided with some supper out of the fridge and I prepared to settle in for the evening. At some point over the previous 24 hours I was tested for Covid antibodies as I think this controlled which part of the ward you were allocated to. Obviously have had both my jabs I would have expected to have had some antibodies present but I'm pretty sure this wasn't the case; then again I had been warned that my condition might make the vaccinations ineffective.
You always imagine hospitals are quiet oases of calm and healing; and at times they are. At other times they are noisy and your sleep is frequently disturbed; I've learned that as long as you know where the toilet is and can get to it and at other times close your curtain across you can withdraw into your own world and ignore what is going on around you.
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My constant companion
©Harveywetdog |
Thursday morning I was up early and ready to face Venetoclax day 1 with a little apprehension but then again glad that I was going to be given the drug, albeit at a small dose. As an aside I have to say that they give you excellent toast for breakfast on the Lilleybrook Ward, freshly prepared to order for each patient. During my stay I was told that the Lilleybrook Ward was a solid tumour ward and that haematology patients such as myself were usually treated "upstairs". I think this meant that the doctors and nurses who dealt with the Venetoclax part of my treatment had to keep visiting me from "upstairs" but I don't think anything suffered as a result. I was aware that there were some very poorly people around me and I feel lucky that so far the Obinutuzamab/Venetoclax regimen has not knocked me about too much. A blood sample was taken for my "before" test, I had my Rasburicase by IV and at about 10:30 I had my first dose of Venetoclax and we were committed! My wife was able to visit for an hour just after lunch. A few hours later a second blood sample was taken and then all I could do was wait for the results and enjoy my IV. One of my nurse specialists called in to see me and agreed it was now time to start setting up my appointments for Obinutuzamab cycle 2 and the remainder of Venetoclax cycle 1 which felt positive. I was determined to eat as much as I could while I was a patient and Thursday evening I had a very pleasant ham salad.
The mixture of hydration by IV and drinking water meant frequent trips to the toilet through the night but that felt a small price to pay compared with the alternatives.
Friday morning and the first question I was asked was "are you being discharged today"; actually it may have been "have you opened your bowels yet?" but going back to the first question I always think it is good to create momentum that you will be leaving even if that is not entirely certain. It was busy all the time I was on the ward and I was sensing that there was a bed crisis looming in the hospital; although I fully understood the balance of risk argument that had led my team to treat me as an inpatient for my first dose of Venetoclax, I started to feel a bit of a fraud with so many really ill people all around me or waiting to get on the ward while I was outwardly a picture of rude health. At some point in the morning a member of the haematology team came and told me my @5 hour blood sample was clear for signs of TLS which obviously was great news although we had to wait for the results of the @24 hour sample to be entirely sure. The @24 hour sample was taken and I watched the porters take it off for analysis. The sample is actually kept in icy water as it is taken off to ensure it gives the best result. I had some more blood taken and my main Doctor visited to confirm the @5 hour result and wonder why I was still on a drip as they had instructed the ward to take it down overnight. Finally the @24 hour result was in and confirmed the findings of the @5 hour result and I was allowed to take Venetoclax dose 2 with my lunch. The bad news was that they felt my HB levels were low (~70) and that I needed another blood transfusion before I was allowed home.
As I'd already had three blood transfusions that week I was a little surprised and disappointed that my level had dropped so much already but, as I'd said above, there is no point passing up the chance for a blood transfusion.
Friday afternoon and I was sat waiting for my transfusion when I was approached by the Doctor and my other nurse specialist who explained that, given the ongoing crisis with beds, they wanted to consider other options for giving me my blood which included coming back on Saturday. I sort of suggested that perhaps the next week was a better option and they realised that would work if they could get me into the Edward Jenner Monday morning before the results of the sample expired. The nurse specialist made some calls, the plan was confirmed and I was finally disconnected from the drip and discharged from the ward. Ironically the Doctor suggested that the fact that I'd been on the drip for so long may have led to my low HB level. They apologised to me for all the changes of plans but to be honest I'd quite enjoyed it. Thinking on your feet, showing leadership and adjusting plans to fit the situation you found yourself in had been all part of my job with EDF; to be honest it was just like old times.
The last thing I'd heard as I left the ward had been GRH 'phoning CGH asking where my notes were as they were needed on the EJU first thing Monday morning; someone else's problem I thought!
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| How the Venetoclax dose will be increased |
Saturday morning and Sunday morning have seen me take Venetoclax doses three and four. Another set of letters have arrived confirming my appointments for Obinutuzamab Cycle 2 and the rest of Venetoclax Cycle 1 (I need to be tested each time the dose is increased in Cycle 1). At present this all looks as if it will be processed as an EJU outpatient. I was to have gone to Bicton on Sunday morning but I decided that the combination of
- Just starting out on a novel treatment
- Early start and long journey there
- Nature of the terrain and the heat of the day on the cross country course
- Long journey home at the hottest part of the day
meant that this probably wasn't a good idea and so ultimately I decided I needed to give it a miss; me collapsing on the course or falling asleep on the way home wasn't going to help my recovery. As it transpired I actually felt full of energy on Sunday but at the same time it was hot here so I decided to write my blog instead.
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Saturday morning thank you from Boris and Grace
©Harveywetdog |
In part 7 we will move into Obinutuzamab Cycle 2 and make the first increase in the Venetoclax dose; oh and hopefully I will finally get my Pirelli All Terrain Plus tyres fitted on the Discovery.
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