Shiela - Rescued by Velcade

Published: 17-Dec-2013

Diagnosed 1995 having pneumonia. WM confirmed by bone marrow biopsy. On Watch and Wait until 2004 when I became anaemic and started to lose weight, then treated over time with Chlorambucil, then Fludabarine, Rituximab, R-CVP and lastly successfully Velcade 2012.

First Treatment- oral Chlorambucil.This was effective until 2006 and I then had a second course. This was effective for a short time only.  I didn’t suffer many side effects except fatigue.

I started on Fludarabine early in 2007.  I immediately had Shingles.  This was controlled with massive doses of Aciclovir.  I had 6 cycles of  Fludarabine.  Very quickly my haemoglobin level dropped on a sustained and regular basis which meant constant blood transfusions.  I reacted badly to transfusions, frequently going into toxic shock.  This was because I produced antibodies so the blood that had been matched no longer matched.  Sometimes it took three days to get matched blood from the rare blood unit at Sheffield.   Eventually, the consultant said I should have washed blood as this meant there was little to which to react.  This worked for a while so long as I was transfused very slowly.   Before each transfusion I was given ‘cover’ to minimise rejection.

In April 2008 I had 4 cycles of Rituximab, plus transfusion and to aid my haemoglobin count  and to try to cut down on transfusions, early in 2009 I was started on Erythropoetin which I injected into my stomach (Eprex).  This helped a bit but I still had to have regular transfusions and by May 2009 I was reacting even to washed blood.  In 2010, because nothing seemed to be working and the transfusion situation was dire, I was started on large doses of steroids. (Prednisolone). By mid 2010 I started to haemolyse  (breaking down red cells) in my own blood.   Eprex was increased and the steroids kept at a high level.  This didn’t do much so a month later, very jaundiced,  as I was still  haemolysing at a great rate, I was given  Cyclosporin (Neoral), which is an anti-rejection drug given to liver transplant patient was,  along with steroids and Eprex.   By November 2010 it was clear nothing was working.  Everything I was taking was having little effect and my Hb level dropped on a daily basis.

In January 2011 it was decided I should have the RCVP regime. (Rituximab, Cyclophosaphamide, Vincristine and Prednisolone). It had heavy side effects.  The Vincristine not only meant hair loss, but it paralysed my bowel which was a nightmare and I was hospitalised in case I needed surgery.  Fortunately not!  Vincristine had to be omitted for the 2nd cycle and reduced for the rest.  After scan and bone marrow biopsy the consultant told me nothing had worked.  The prognosis was poor.  I was told that there was a multiple myeloma drug  Bortezomib (Velcade) that had been tested for WM in Canada, and for someone who fitted the criteria it could be available on a specially funded NHS programme if I was accepted.  The main criteria was that nothing else had worked and it was ‘last chance saloon’. 

Bortezomib (Velcade).  I have had 5 cycles of this and it’s working a treat at the moment. (Jan 2012). Blood count staying stable and lymph nodes in abdomen and chest reduced in size. Bone marrow holding up well.  I can have 8 cycles of Velcade but no more as it’s so toxic.   For sheer excellence in absolutely every way, the Medical Day Unit (Oncology) at Southport and Formby Hospital, in my view, must rate among the best.

I worked as a conveyancing assistant until I started Velcade in 2011(I am now 68), but because of the time the cycles take up I had to stop. However, I keep in touch and hope to get back to work. I live in hope!!!  I also sing with Rainford Ladies Choir, practising once and sometimes twice a week. We sing every type of song and do concerts. It's great fun, but hard work as we learn new songs all the time and sometimes its four part. I'm an Anglican and write scripts for a number of things at Christmas and during the year - and for the church magazine. It's very interesting as sometimes I interview people. To keep in touch with the world generally most days I go into St Helens on the bus - and the small bus I catch is like a travelling club as we all use it most days.  If anyone's missing for a day or two there is a big inquest when the wanderer returns. A full explanation is required and is given in the half hour bus journey. Because I get a lot of fatigue and peripheral neuropathy problems the bus is a good way of getting about as it stops almost outside my door. Also, my bus companions are mostly the halt and the lame, like me, so I know someone will pick me up if I keel over!