Excuses, excuses, excuses

Good heavens, I’m posting a blog update again!  Apologies to those who have been looking for an update a little sooner.  There were a few in the pipeline, but [delete as appropriate]:

  • I wrote hundreds of them but just couldn’t for the life of me find the “Post now” button – there it is! How could I have missed it!
  • I wrote them all out on paper first, but spilled beef gravy on every single one and the dog ate them
  • The terms of my court order have prevented me, until now, from publically communicating with groups of more than 6 people
  • I’ve been so very busy with work and family life that writing a short blog update was just out of the question
  • I kind of just forgot about it
  • The treatment has just been ticking along in the background, without too much effect on daily life, and it was nice to just disengage from the whole issue for a while

[You may gather that there is a spread of veracity to that list, tending to start weakly and improve going down the list]

A high-level summary

After my hospital stay last summer for high-dose chemotherapy (melphalan) followed by autologous stem cell rescue (i.e. using my own previously stored stem cells to repopulate my immune system), I started on some “consolidation” oral (pill-popping at home) chemotherapy in late October – to improve on (“deepen”) my response to the melphalan treatment.

This consolidation treatment has been based on lenalidomide (Revlimid), in combination with cyclophosphamide and dexamethasone.  Those familar with this kind of stuff will recognise this as “RCD”.  As I’ve previously commented, being on the lenalidomide has been really good, in that I really don’t notice that I’m taking it and don’t appear to have suffered any side-effects.  Lenalidomide is a derivative / development of thalidomide, which I took previously and although it was really quite effective in terms of treatment, it was quite hard work (thalidomide is quite a strong sedative) and has left me with some numbness in my toes.  The more significant feature of this RCD treatment is the effect of the dexamethasone (a steroid).  I take it on Thursdays and Fridays, and don’t get much sleep the following nights.  Actually this itself isn’t so bad, as I get a lot done on those days – both from just having more hours in the day and from the mood / drive / energy boost the dexamethasone brings.  The downside is the consequent come-down / crash that inevitably follows later in the weekend and tipples over into Monday a bit.  But you can plan for it and it’s workable.  Incidentally, for others taking dexamethasone, I understand that the default prescribed pattern is to take it for four consecutive days, separated by a week off.  Discussions with my consultant revealed that there isn’t much evidence either way for which pattern (2 x 4 consecutive days split by a rest week; or 4 consecutive weeks taking it on 2 days) is more effective.  I gather from others, and can well imagine, that 4 consecutive days of dexamethasone would be really quite hard work and I recommend the other pattern.

And generally the progress of treatment with RCD has been good, with progress (measured by the level of free light chain proteins in my blood) overall being in the right direction (downwards) – with some of the usual fluctuations (for me) on the way.  The values aren’t where they should be, but hopefully the downwards progress with this regime can keep going in that direction for a while yet.

One curious hitch

There was one minor hiccup though.  Just before Christmas one of my liver enzymes (ALT) that is monitored shot up, and it was unclear why.  I came off the treatment for a month or so (essentially skipped a cycle) whilst various further tests were done to try and track it down.  The curiously good news (I think) was that it turned out not be be any kind of reaction to the treatment, but in fact I’d picked up hepatitis E.  OK, so not so good in itself, but good because a) I could resume the same treatment regime; and b) by the time it had been identifed as the cause, I’d already independently seen it off (and had the antibodies to prove it) – thus demonstrating an effective immune system (at least in this regard).  The footnote to this story is that I’m pretty sure what might have given me the hepatitis E (which is well known to be present in quite a lot of uncooked pork).  A week or so before the ALT levels started rising, I’d been in Grenoble, France for a work trip on my own, and one evening ordered a starter, which to be honest I wasn’t entirely sure what it would be.  Turned out to be a kind of sliced pate sausage, which had only been very lightly pan-fried on each side of the slices.  More curious is that I actually took a photo of it at the time.  I’m a bit of a foodie, but don’t often go as far as taking photos of resturant dishes, but I was eating on my own and got a message from my sister asking what I was eating, so I showed her.  And here it is:

Dodgy (but tasty) French pate sausage

 

 

 

 

 

 

So, you have been warned.  Possibly better to establish what you’ll actually be getting when you order – though that does take some of the fun surprise element out of it.  (I mean the fun surprise of trying some new food, not the fun surprise of contracting hepatitis E).

More soon, folks.

Advertisements

Tags: , , , , , , ,

3 responses to “Excuses, excuses, excuses”

  1. ppinchin says :

    Good luck Nick. Hope this long drawn out treatment wil work for you. As you have liver involvement, might you be a candidate for the new NAC drug? Phase 2 they say wil begin in the autumn?

    • whatnickdidnext says :

      Thanks. Actually I don’t have liver involvement – I just happened to have about of hepatitis E. I do however have cardiac involvement, so I’m very interested to watch the development of the new NAC drug and see if I might be a candidate – it’s under discussion at the moment between my consultant and the NAC team.

      • ppinchin says :

        Good to know it is being discussed. A positive step. Good to know too you do not have liver involvement. Liver and spleen were criteria for phase 1 which is over now. So they should be designing phase 2 . Hope that will make it your turn…..and mine!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: