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[Closed] Another Leukaemia Update

29erKeith · 2015-09-11T07:48:23Z

Another Leukaemia Update Well it's been nearly a year since my chronic Leukaemia diagnosis and 7 months since my Acute Leukaemia Diagnosis, well what a year it’s been. I think saying it's been a physical and emotional rollercoaster ride is an understatement! My last update was a few months back now and quite a lot has changed. So I thought I’d do an update, I think at the last update I’d had my second round of chemo which went pretty well bar quite a bit of sickness but no complications or infections which are common and I was on my way home for a short break before transplant. Well the break turned out to be longer than expected, and full of unexpected complications and admissions unfortunately. First complication came when we found out the Leukaemia had spread to my Brain/Spinal which is a a bit of safe haven (CNS Central Nervous System disease), it’d been clear at the previous tests so that was a big setback as it make it makes the leukaemia harder to fight and delays transplant as that needs to be in remission first. So I had a few extra Lumbar punctures with Intrathecal Chemo doses in there. I had a week or horrible headaches from the first which left me pretty much bedsofa bound basically unless I was horizontal I had unbearable headaches. Managed to get on top of the pain with regular morphine and steroids, which was ok. I managed to go to a couple of really good friends wedding which was amazing as we weren’t expecting me to be able to go, one of the best days I’ve had all year. I’d had an LP the day before too so to be feeling so good and mobile for the day was a great relief, I had a short afternoon nap but other than that was there the whole day and evening, which was amazing! The next day we drove home and in the evening I had a bit of a headache come on so went to bed about 7ish hoping to sleep it off. I woke up about an hour later in terrible pain with a temp of 39. Neighbours were amazing coming round to babysit at a few minutes notice before the grandparents could get there, as my wife rushed me into hospital straight to the Leukaemia ward where they had a room set up ready with blood cultures etc ready to go, XRays and CT scan etc done that night. I lost several days really didn’t really have a clue what went on bar a horrible lumbar puncture I barely opened my eyes bar for regular neuro’ ob’s I could barely move my head and was incredibly photo sensitive. My wife barely left my side for a few days sleeping (mainly not) in an arm chair in my room for the first night. They’d told her the first night but the suspicion was meningitis. So I was on 3-4 drips at a time pretty much 24 hours a day for 4-5 days hitting me with everything they could to be sure. In the end they were not required as it was Chemical Meningitis which was a reaction to one of the chemotherapy drugs put into my spinal/brain fluid. Now that was a rough week! after about 3/4 days I was coherent and improving and by the end of the week I was allowed home again with a good amount of morphine though, but home. So back on track we thought had a week or so of outpatient stuff. then all of a sudden out of the blue I couldn’t feel my arse! a bit odd, I mentioned it to the new registrar when i was in the following morning for a bone marrow biopsy who didn’t seem overly fussed. Next day I was in for another LP and chemo dose. Senior Reg basically said lie down don’t move we’re admitting you now for and MRI. Great! I get stuck on a horrible ward at no notice to get an MRI in the morning. I’d driven in myself and had the clothes on my back. so call to get somebody to drop my wife in to pick up the car and drop some things in. I had the MRI and waited all day for an answer. basically a bulging disc below the LP so not directly related but could be a chemo reaction or CNS related. numb half and arse was annoying but very altered bowels was not so good. Thankfully that's pretty much sorted itself out with the aid of steroids. still got a numb patch on my left cheek but bowels work again thankfully! sorry if that's too much detail. So back on track again, another week or so and another LP planned last one was clear of CNS and they needed 2 to proceed with transplant. turned up for next LP and my platelets had crashed to about 5 they need to be 50 for an LP, 10-20 for you to be safe ish to be out of the hospital and normal is 150-400 ish. I’ve had a lot of struggles with platelets, a lot of the drugs really seem to clobber mine. So I got re-admitted again pumped full of platelets for a few days, LP done, oral chemo dose reduced and sent home, then back in again as they crashed again, then back out. Good News the LP was clear! so transplant was back on the cards! Then a few days later I woke up from an afternoon nap and half my face didn’t work properly, it came back a few hours later but then settled in as permanent thing, So I was back in again! a bell's palsy, the question was and is why, CNS or the re-activation of a virus on the 7th ner...

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vickypea

Posts: 0

Free Member

All the best for a recovery. Keep fighting!

Posted : 12/09/2015 7:45 am

wonkey_donkey

Posts: 0

Free Member

All the best to you and your family, amazing read.

Posted : 12/09/2015 10:03 pm

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