Paul Lockyer
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Pentostatin was right for me.

Paul Lockyer
Posted by
04 Dec 2015

Chemo every other day & fluid draining was taking its toll now, but with the Pentostatin added the end of chemo was coming into sight.

The Pentostatin was definitely the right treatment and all of a sudden my white cell count was looking better under a 100 and with the new chemo it kept going down... On one occasion in the Day Unit a student nurse was keeping busy & clearing up when she put my chemo in the bin ! A few days later when I mentioned this a senior nurse was a little shocked and proceeded to tell me how much this cost, in honour of this I had a "tee" shirt printed with the legend "l have Pentostatin because l'm worth it", l have got to say that this caused uproar when l wore it on my next visit.

Week sixteen was when it was originally thought l would finish chemotherapy, this unfortunately wasn't the case but we still went out for meal as a special treat. Having missed both my mother & fathers 80th birthday celebrations earlier in the year do to the risk of exposure to infection, this was the first time we had done something "normal" since my diagnosis. I had my first pint of beer for four months it tasted awful.

Getting into December 2013 and my white cell count was less than 20 & things were going well. I had managed to avoid any further treatment for infection since week one, chemo continued three times a week has usual (Pentostatin was now once a fortnight). On my second visit to the Royal Marsden the doctor was so pleased to see my blood test results, she suggested that the time was right to discuss my next step a Bone Marrow Transplant.  

I eventually got an appointment to see the Transplant Consultant and he was convinced that this was my only/best option. You don't really want to hear that but it's the hard truth and you definitely don't stop to consider any negative outcome. What appeared to be several litres of blood samples were taken including those required for a bone marrow match.



Another brilliant Blog Paul.

I love the fact that you got that T-shirt made up - do you have a photo? I was staggered by the cost of my treatment, too, and it makes you realise just how lucky we are to live in the UK.

So glad that the Pentostatin was successful in getting your white cell count down so quickly and in a position where you could prepare for the transplant. At this stage there was an awful long way to go but I guess you knew that there was at least some potential end in sight provided you found a suitable donor.

Looking forward to reading your next blog and thanks again for being so open and honest with your experiences.