Chemo Days

It occurs to me that whilst my usual posts explain my day-to-day-life, they don't give many details of my experiences regarding the various medications that constitute my current treatment - my "chemos".

I'm currently prescribed three drugs for this phase, called re-induction, of the Myeloma XII trial;
The trial is all about Ixazomib.  This I take on days 1, 8 and 15.  This cycle started without stock so day 1 was missed.  I now have stock so will take today and day 15.  I'm not aware that I have any side effects from Ixazomib.

The next drug, perhaps surprisingly, is Thalidomide which I take every day.  This caused terrible birth defects during the 1950s and 60s.  It is now recognised as having anti-cancer properties. One of the side effects is to cause tiredness which I do experience and one information leaflet recommends avoiding alcohol because of this.  Since I started the trial, over 4 months ago, I have abstained from alcohol.  When this is over I will do my best to catch up !  In the meantime I certainly often feel very tired and lethargic.

The third drug is dexamethazone.  This is a steroid which I take on days 1, 8, 15 and 22.  The trial requires that I take 40mg each time but it is supplied as 2mg tablets.  Yes, on each of these four days I take 20 small tablets which taste very bitter.

20 Dexamethasone Tablets

The certain side effect of dexamethasone is insomnia.  Pretty well without exception, having taken it I will not sleep much that night, despite feeling tired due to Thalidomide.  That means that Thursdays are pretty much a right-off.

Fridays, Saturdays and sometimes Sundays are characterised by constipation.  I can't be sure which of the drugs causes this but probably the dexamethasone or it may be the combination.  The effect is quite severe and whilst it is on-going I feel generally unwell and light-headed.  As if these various side effects are quite enough, I also experience tinnitus which sounds like a high-pitched hiss of varying amplitude.

To summarise then Thursdays - Tired having not slept. Fridays, Saturdays, and some Sundays constipated and generally unwell. Mondays, Tuesdays and Wednesdays somewhat tired and light-headed but my best days.

I'm currently on cycle 5 and must endure these effects to the end of cycle 6 towards the end of November.  My consultant prescribes various other drugs to minimise the side effects.  It does seem that the effects are getting more significant - perhaps cumulative?

I see this as an investment and I do my best to swim through the treacle.  It is to be hoped that, when re-induction is completed, I will feel my usual self again and ready for the next stage of treatment - stem cell mobilization and harvest.

Keep well

Stephen

Fifth Re-induction Cycle

This week's consultant appointment confirmed my expectation that I will receive both cycles 5 and 6. This is due to my response to the treatment and this was confirmed with my latest paraprotein count of 6 at the end of cycle 3.  Being the same as the count at the end of cycle 2, this indicates that I am now in plateau.  I was accordingly prescribed for cycle 5.  Now that produced an interesting situation as, when I went to collect my medications, the trial drug (Ixazomib) was not available.  There had been a supply problem.  Ixazomib is taken on days 1, 8 and 15 so it was agreed that I would miss it on day 1.  It is to be hoped that I will have received stock in time for day 8.

Since the last my last post, Margaret and I have returned to Cyprus.  This is the first trip since we sold our holiday home 18 months ago.  I had discussed the timing of the trip with medical team and it was agreed that during cycle 4 would be the best.  This, of course, meant that the temperature in Cyprus would still be rather higher than we would have preferred.  In the event, it was 30 degrees every day!  Margaret had found excellent accommodation which proved very comfortable.  It was especially good to meet up with ex-patriot friends and to see some of the Cypriots that we had come to know so well.  We took the opportunity to re-visit many of the restaurants that were so much of our life.

Kyrenia Beach Restaurant

This picture show the Kyrenia Beach Restaurant on Avdimou Beach.  This is most definitely not on the tourist trail.  Instead the restaurant is known to a fairly select group of customers and the beach is the favourite haunt of kite surfers.

The only down side of the trip was the significant delay on the return flight of 2 hours 57 minutes.  Thanks easyJet !  But then there is a well-known saying:

Time to spare - go by air

Keep cheerful and keep well

Stephen

Fourth Re-induction Cycle

This week I again visited my consultant and have been prescribed for the fourth re-induction cycle.  I was also told that my paraprotein level at the end of cycle 2 (remember that it is necessary to wait for test results) had fallen to 6.  This was both good and, perhaps, not-so-good news.  The good news is that I have continued to respond to the re-induction medications and that I have now more than halved my starting level which was 13.  The not-so-good news resulted from a discussion with the consultant, the upshot of which is that I will not complete re-induction after cycle four.  Realistically I will probably need the maximum number of six cycles.  This will mean that this stage of treatment will probably continue until the end of November.  It also means that I am probably only half way through !  I must, of course be thankful that I am responding and that the side effects, whilst challenging at times, are tolerable.  I could be in a much worse place.

Since the meeting I've received notification that I have an extra appointment one week after the end of cycle number 6.  I can only guess but given the timing, it would seem likely that I will be scheduled for stem cell mobilisation and harvesting before Christmas and then be admitted for transplant in the new year.  I am so impatient.

Since my last post very little has happened but most notably our elder son and our grandson visited for a weekend.  It is always a joy to see them and we really do appreciate the efforts of both our sons when they travel from the Bournemouth area.

We must accept finite disappointment, 

but never lose infinite hope.

Martin Luther King Jnr.

Keep well

Stephen

Third Re-induction Cycle

Earlier this week I attended my consultant's clinic and received the good news that my myeloma is responding to treatment.  As I started the cycle number 1, my paraprotein count was 13.  At the end of the cycle the count had reduced to 8.  Because the result of paraprotein testing is not known for about two weeks, I won't know the result of cycle 2 until my next appointment.  The news is good and makes the various side-effects worth tolerating. Importantly, I was prescribed for cycle number 3.

I continue with my usual cheerful demeanour and decided I needed a project to keep me inspired (and perhaps a little busy).

My new toy

A long time ago I owned a Mark 1 (Frog-eyed) Sprite and enjoyed driving it around the country roads of my then home in Yorkshire. Much later I had my first sight of a Mazda MX5 and wondered if perhaps I might one day own one.  This is a 2003 model with a 1840 cc engine developing 146 BHP.  It does have a number of jobs which need attention and I relish the opportunity to make the necessary improvements.

Our family has the habit of applying names to inanimate objects and this would be no exception.  I decided that, as I hope the MX5 will be a trusted servant, it should take the name of a butler.  I decided on the name of Brabinger who was butler to Audrey Fforbes-Hamilton in the TV series "To the Manor Born".  This purchase can perhaps be seen as a sign of my confidence in my future.  Its care and maintenance will certainly keep me busy!

At a very enjoyable social event last evening it was suggested that I have a "glass half full" attitude rather than "glass half empty".  I corrected the suggestion by pointing out that as an engineer I considered the glass to be the wrong size!

Keep well

Stephen