Upping the ante

I haven’t posted a medical update for a while partly because there hasn’t been much to report and partly because I’ve been enjoying life and this fabulous hot summer we are having in the UK seems to find a way of taking up most of my free time. I have been away a lot, trips include to Somerset to visit family, Orgiva in Andalucia to visit a friend  and a visit to Otley to see the Tour de France Grand Depart and more recently a short break in the Manchester Royal Infirmary!

Some photo’s below although not of the MRI!

 

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So here goes. I have nearly completed the 14th cycle which is now a 5 weekly cycle with Velcade once a week for the first 4 weeks plus of course the dreaded Dex (steroids) which is a fairly low dose now and I have remained on the Onyx Endeavour trial (see my post Urine saves the Day) My last Velcade injection was yesterday. It is usually on Mondays but on Sunday night after a fun weekend in Nottingham visiting friends I had to go to A&E with a high temperature (39,2*), anything 38* or over is considered reportable plus I’d had diarrhoea and was feeling shivery. Damn nuisance. I arrived 10pm and eventually was given IV antibiotics and told I would be admitted. I lay on a hospital trolley in a hot room with bright lights and the sounds of other patients groaning and kicking off which wasn’t conducive to sleep.  At 4am I was admitted to a bed in a side room on the Acute Medical Unit, slightly better but not a minute’s peace with interruptions for observations, forms to be gone through,drips to be attended to and no pillow! Managed to doze till around 8.30am when I was brought some welcome tea and soggy toast. And then the usual wait to see the ward doctor and much later on a doctor from haematology. I persuaded the haematology doctor to discharge me with oral antibiotics  as my temperature was stable and I hadn’t had any diarrhoea for a while. He agreed on the basis that I said I would have some one with me that evening and would call haematology if my temperature went up again. Yes of course I said to both although a little vague on the former so I was eventually discharged early evening, phew!  An initial diagnosis was viral gastroenteritis.

I am much better for being at home and resting and the diarrhoea is on the way out!! These things happen when on treatment and any infections have to be taken seriously because of my lowered immune system but fortunately this is the first admission I’ve had in the 12 months since I started treatment and apart from the flu I’ve got off fairly lightly. However the love affair with velcade may be coming to an end soon as my kappa light chains have risen again out of normal range even on our lab tests (see my post not good not bad ). At my last clinic appointment on 27 June, it was agreed that I would have another 5 week cycle at an increased dose (from 1.0 to 1.3 so about 30%) but if that didn’t either keep my light chains in check or even better to decrease then I would proceed to an autologous stem cell transplant either without further treatment or with a more intensive cycle of chemotherapy depending on how high my numbers have risen and/or the results of a further bone marrow biopsy.

My next clinic appointment is tomorrow and I will find out the results of the light chain test I had done on Monday (this was after my 3rd Velcade injection). I feel surprisingly calm about finding out the results tomorrow which will determine the next stage of my journey. I realise that I may be leaving my readers on tenterhooks, a little taster of how I feel most of the time but the  waiting is nearly over and I promise to do another update shortly on the outcome!

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