Summary Text

SUMMARY: First diagnosed with myeloma October 2011. Recruited onto clinical trial Myeloma X11 (Lenalidomide) at Bristol Oncology and Haematology Centre. First High Dose Therapy and Stem Cell Transplant (HDT&SCT) in July 2012. On maintenance until June 2017. June 2018 recruited onto Myeloma XII trial (Ixazomib). December 2018 Second HDT&SCT. On maintenance until February 2020. August 2020 Commenced treatment involving Daratumumab. April 2021 relapsed. June 2021 recruited onto Cartitude 4 clinical trial and infused with CAR-T cells in October 2021. My own immune system is now fighting the cancer . I am exceedingly fortunate.


Wednesday, 26 September 2018

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



Saturday, 1 September 2018

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

Thursday, 2 August 2018

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

Tuesday, 10 July 2018

Second Re-induction Cycle

Last week I attended my consultant's clinic and, everything being OK, I was prescribed for the second re-induction cycle.  Accordingly I came home with fresh stocks of Ixazomib, Dexamethasone  and Thalidomide.  Also in the pack were the various medications intended to control side effects.

The first cycle was characterised by recognisable side effects.  The Dexamethason, which is taken on days 1,8, 15 and 22 resulted in insomnia for at least one night each.  The Thalidomide, which is taken each day, seems to be the cause of what I will describe as light-headedness.  I have been taking this at night and now propose to take it earlier in the evening to try to bring the effect forward.

Overall I seem to have less energy and I'm more prone to needing an afternoon nap.  And all this now without any alcohol !  What drives me is the recognition that the last clinical trial resulted in 6 years of being relatively treatment free.  I can only hope that investing some effort now will produce a similar effect.

Last month the family came together for a Ken (barbecue) put on by our elder son to celebrate our younger son's birthday.  The weather was, of course, fantastic and it was so good to get everyone together and so happy.


The Royal Air Force is 100 years old this year.  I recently had the great pleasure to attend the Cosford Airshow with a very good friend and my younger son.  Today the centenary has been marked with a service in Westminster Abbey, the presentation of a new colour, and the largest flypast since the second world war.  It came as something of a shock to me to realise that having served for 23 years, I had been associated for almost a quarter of the life of the service.  I thought it only right to show my 'colours' to my neighbours this week by flying an RAF Ensign !

It occurs to me that the Royal Air Force motto: Per Ardua ad Astra (which variously translates as "Through struggle or adversity to the stars") can also be applied to myeloma where investment in treatment can result in a positive outcome.  So....

Per Ardua ad Astra

Keep well

Stephen