Onwards !

Since my last post, little has happened but there has been a significant change regarding my myeloma treatment.

During cycle 5, which is just ending, I was phoned by my trials nurse and told that the paraprotein count at the end of cycle 4 was still at 6.  It has remained at 6 for 3 cycles thus confirming that I have plateaued.  This being the case, there is no benefit in continuing onto cycle 6.  At today's clinic appointment, my consultant confirmed this situation.  This is excellent news as the side effects were certainly hard going at times.  It is necessary now to check what effect, if any, the 5 cycles have had.  Accordingly later this week I have the renewed pleasure of yet another bone marrow biopsy - oh joy!

Also at the clinic, my belief that I do not have any stem cells in storage was confirmed.  In preparation for stem cell transplant, I will need stem cell harvesting preceded with mobilisation.  Last time it proved difficult to harvest stem cells from me (hence the lack of spares now!) so I will be given an extra medication called Plerixafor.

It is perhaps worth listing what is now ahead:

- Bone Marrow Biopsy (to check for any effect from the 5 re-induction cycles)
- Echo Cardiogram and Lung Function tests (to confirm my health before proceeding)
- Mobilisation (involves self-injection of growth hormone and nurse administered Plerixafor in order to cause stem cells to circulate from the bone marrow and into the blood stream)
- Harvesting (one or more days connected to a machine to recover stems cells from my blood stream)
- Randomisation (to determine which of two paths - either standard transplant or enhanced with the trial drug Ixazomib)
- Final checks of my health then ....
- Installation of a central line (this is a tube into a major vein through which multiple medications can be administered, thus saving injections.  At Bristol it is normal to have a PICC line which has two tubes; one for introduction of medications and one for blood sampling)
- Admission for High Dose Therapy and Stem Cell Transplant (I expect this to happen in early December and last for about two weeks)
- Period of recovery (after discharge my immune system will be somewhat weakened.  Recovery can take several weeks, even months).  It is to be expected that recovery will be over the Christmas period which, this year, will be rather "peaceful" !
- Further randomisation (to determine whether I receive maintenance therapy with Ixazomib - or not)

All this may seem daunting.  Firstly, I've previously had HDT&SCT so I know what is coming.  Secondly I only have to do one thing at a time.  Thirdly and most importantly, it is the best possible treatment I can receive in order to control my myeloma.  I am most grateful that my health and circumstances make it possible.

Stem cell research can revolutionise medicine,

more than anything since antibiotics.

Ron Reagan

Keep well

Stephen

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