If you saw my previous post then you will know that I intend to provide one post during my time in hospital which I will try to update blow by blow.
...oo000oo...
29th Oct Excellent news- doctors saw me this morning and have agreed that I be discharged later today. There is quite a process required but such good news. Last night I had been given a drug to account for the fact I had been retaining fluid. The result was multiple trips to the bathroom throughout the night!
27th Oct The last 24 hours have again been memorable for the wrong reasons. I had multiple episodes of high temperature (one in excess of 39 degrees) and uncontrolable shaking. I can only say how fortunate I am to be here in the BHOC.
25th Oct Life has taken a new character with notably very high temperatures certainly above 38 and on one occasion above 39. These have led to episodes of shivering. I woke this morning to shivering and a very damp bed. I can be given paracetamol but only if the episode are sufficiently spread out. I am told that these symptoms are characteristic of CRS. As the CAR-T cells identify and kill myeloma cells, Cytokine is released which in turn causes reaction by the immune system. Meanwhile going home on Friday seems unlikely.
24/25th Oct Just when things seemed to be settling into a routine, last night proved to be somewhat dramatic. At 10pm my obs indicated a temperatre of 87.8. By 1am it had risen to 88.7 giving rise to concern. The staff have to assume it is due to an infection so multiple tests were carried out. For most of an hour 2 nurses and a doctor were dedicated to me. Once all tests were complete I was allowed paracetamol to counter the fever. This partially worked as witnessed by the state of my pillow in the morning. In the morning my low blood pressure became apparent. This suggested possible influence of CRS. In other words, my body reacting to the CAR-T cells. Rather tired, I have spent the day snoozing.
21st Oct This is now day number 7. Judging by what I'm told about my blood results and my "Obs" (observations - blood pressure, temperature and oxygen level), I'm doing fine. I also feel well with, so far, no side effects. I am only too aware that ahead of me is a period when such effects do materialise.
16th Oct Sunday and Day 3 (the trial defines day 1 as being when cells are infused). It has been 5 days since I received any chemo, and today my blood test indicates that I am now neutropenic meaning that my immune system is currently not functioning ! I must now remain in isolation until my immune system starts to recover and any side effects from the treatment are manageable.
Margaret visited just before lunchtime bringing vital laundry supplies but most importantly herself. Thanks to mobile phones we can speak every day but her presence is so much more.
15th Oct Yesterday's clarity became a reality today. It is not possible to adequately explain the significance receiving CAR-T cells which had been collected from me on 22nd June as T-cells. My day started early with the need to get breakfast, showering and dressing completed. A team assermbled to undertake the process: a senior nurse who would undertake the infusion, a pharmacist, my trials nurse, and the head of our trials unit.
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My cells arrived on the ward deep frozen in liquid nitrogen and contained in what seemed to me to look like an undernourished adolescent Dalek
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Inside the Dalek was an aluminium cassette the purpose of which being to protect the now very valuable CAR-T cells.
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Inside the cassette was the bag containing my cells. These now needed to be defrosted in a water bath. Notably my cells had left me somewhat pink due to red cells. Now any non-white cells had now gone. The cells were now milky white.
To the strains of "Give me Sunshine" by Morecambe and Wise, the process of infusing the cells took only 25 minutes. Notably they could not travel through the PICC line, instead a canular was required to enable them to free flow due to gravity rather that through a pump. The rest of the morning was taken up with pre and post checks to monitor my health. I cannot begin to express how fortunate I am. I have just received one of the most advanced treatments by a world-class team. Thank you.
14th Oct At last I now have clarity - authority has been sought from and granted by Janssens in Boston USA, that I will receive my CAR-T cells early tomorrow. Great news. It does mean that I will be kept in hospital for a minimum of 14 days starting tomorrow. All in all I'm feeling fine and this morning's temperature was below 37 , so very good. Also positive is the fact that the air conditioning is now functional and will keep my room cool as the sun comes round. Last occupying this room in December 2018, I took this picture. Very little has changed. The exercise bike has been replaced as has the bed which can now weigh me!
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13th Oct As suggested yesterday, it was decided that infusion of my CAR-T cells should be postponed. I was visited by a consultant I had met before and I knew to be influential resulted in the positive hope to proceed tomorrow, if not then Frjday. Meanwhile I remain on precautionary antibiotics. Positive mood was maintained at tea time with the offer of birthday cake. The ward checks for birthdays and buys in, at hospital expense, a cake to celebrate .
12th Oct My relocation to new accommodation took place mid morning to a room that I had last frequented in December 2018. The room is configured for my isolation complete with airlock entry. It also has a good view :
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A visit by the doctor did not bring the best news. The two occasions when my temperature spiked remain unexplained and give rise to concern to me being infused with my CAR-T cell as scheduled tomorrow. She decided that I should be prescribed antibiotics. I guess we'll just have to wait and see.
11th Oct This was the first of two "rest days". There were two notable events. Firstly my temperature spike to 38 degrees necessitating yet more blood tests. Secondly was the announcement at 10pm that both my roommate and I would be moved to new accommodation during the night. In the event he was moved whilst my move to an isolation room had to be delayed until it could be deep cleaned.
10th Oct Yet again, my treatment started late in the day. Margaret visited and we agreed that Sunday mornings were the most practical; low traffic levels and easier parking. Notable was the fact that our room, normally too cold was far too hot. This coincided with me having a temperature spike. Normally 36 point something, the first suggestion of a problem was when it was measured at 37.4 then later 37.7. This was a marker for my nurse to keep a watchful eye. Sure enough it went up to 38.3 and without explanation. I was not neutropenic (my immune system was still intact). This led to massive numbers of tests. Later my temperature dropped to 37.7 but clearly I'm not out of the woods yet.
9th October Nothing much to report. Treatment started at 6pm to ensure adequate time from yesterday's. The haematology ward has 24 beds and I'm currently in a two man room. If he or I become neutropenic then a single room will probably be allocated. The ward is full and very busy. Some patients very unwell. Today 's treatment will end at about midnight and I'll be woken to take a tablet at 2am. Hospital is anything but restful!
8th October I needed to provide yet more blood samples - these to go to Switzerland. I therefore attended the BHOC in the morning. I also got the good news that a bed would be available later in the day. Once the bed availability was confirmed, Margaret drove me back to the BHOC. Arriving in the ward, everything was ready for me. Various questionaires needed to be completed. To my surprise my treatment was to go ahead immediately. First I needed to be checked by the doctor who signed off the chemo. Then came two different chemos. Compared to the times when I had stem cell transplants these are much milder. As seems typical, no sooner than I'm given chemo, the protocol then seeks to flush it back out. Accordingly the next infusion was a huge bag of saline which was to end after midnight.
7th October I was scheduled to be admitted today - Wednesday, First I need to have a PICC line fitted. This is a remarkably painless procedure given that a tube (actually two tubes) are inserted into a vein in my arm which are to be used to deliver medications to a location just above the heart. During my visit I was told that no bed would be available and to go home.
5th October Tuesday required me to have a second Covid PCR.
4th October Monday required me to attend the BHOC for my workup clinic which checks my general health and includes an X-ray, ECG, and blood tests. It also accounts for any necessary consent forms.
