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