Archive | November 2013

I’m a dreadful blogger (which is good news in a way)

It has, I realise, been an awfully long time since I posted an update.  Apologies to anyone who’s been wanting an update but perhaps hasn’t wanted to ask more directly.  Double apologies if the radio silence was a cause of concern for anyone.

In fact the reality is that no news has certainly been (almost entirely) good news in this instance.  Since returning to work in August after recovering from my hospital stay (for an autologous stem cell transplant) I rapidly returned to full strength and activity.  This has combined with the double whammy of my particular workload having gone very busy in the last few months, combined with the fact that Andrea (wife) is in the final throes of getting a thesis written, which has upped my share of the parental care of Felix (son, age 3, bouncy).  Non-essentials have slipped off the radar a little of late.

I’ll give a brief overall summary here, but I think I’ll also back-date a few more detailed posts giving in particular more medical details, such that the information is there for the record.  If you only read this blog in its website hosted version, you’ll not really notice (apart from a few unread “previous” posts appearing if you’re a regular reader).  If you read this by email, the ordering might seem a little strange.

So, as I said I went back to work in August.  In fact I went back part-time for a week starting on Monday 29th July (41 days after discharge from hospital), found the part-time-ness frustrating and unnecessary and the following week was full-time.  I still eased myself in pretty gently – I’m fortunate that I have a desk-based job (it must be so tough for more manually employed labourers to go through what I’ve been through) and in particular my work colleagues have been fabulously supportive.

My “100 days since transplant” fell in September, and on the 1st of October (4 months after transplant) I had a review meeting with the consultant.  Just previously I’d has another bone marrow biopsy (BMB) done (in the brand spanking new Haematology Day Care wing of Southampton General) as well as a full bank of blood tests, including the all-important (for me) “free light chain” levels.  In overall summary the results showed that the hospital treatment had had a solid effect on my disease, bringing down both the unwanted bit in the BMB and the free light chain levels.  Nevertheless both were still at levels that warranted some more treatment.

A range of options for further treatment were discussed (see another more detailed post for that), with the decision being to start on a series of cycles of “consolidation” chemo, using the combination Revlimid / cyclophosphamide / dexamethasone (“RCD”).  Revlimid (aka lenalidomide) is a derivative of thalidomide and works in a similar way, but is less likely to cause peripheral neuropathy (numb extremities).  That was one reason to try the Revlimid this time instead of more thalidomide, as I do have some numbness in my toes, which the thalidomide I was taking previously is probably responsible for.

First cycle of RCD started on 31st October, and I’ve just started cycle two on 28th November.  It’s going very well (at least in terms of tolerance – no results are available yet).  The great feature of the Revlimid (lenalidomide) is that it’s not a sedative like the thalidomide, so I’m not getting knocked out cold every evening and waking up with a thalidomide “hangover”.  In fact the only thing I notice from popping the pills is the usual steroid effect, but in my case for these cycles, that has landed on Thursdays and Fridays, which actually is quite a nice little boost towards the end of the week…

So, more news to come when results are available, but for now I’ll keep popping the pills, burning the candle at both ends (especially on a Thursday and Friday) and juggling that with entertaining Felix.  This morning we’re going climbing at a local climbing wall with friends.  His first time ever and my first time back in far too long.  Should be fun!