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, 25 September 2019

Another Setback

First the setback to my treatment and then details of our holiday.

I attended clinic as intended as soon as we got back from holiday.  My appointment should have been whilst on holiday so I was extended from the normal 28 days by a further week.  You will recall that in August, I had exhibited a low platelet count.  Yet again my count was low and had prevented me from being prescribed for maintenance cycle 5.

Today I returned for a further blood test and again my count was too low.  I shall be returning next week - at which point cycle 4 will have been extended by 3 weeks.  This is the maximum allowed by the clinical trial.  If my count has increased sufficiently then I will be prescribed.  If not, then I will be withdrawn from the trial and placed on "wait and see".  This would be most disappointing.  It seems that the trial drug, Ixazomib, can cause the production of platelets to be degraded.  Added to that, I have a cold which can have a similar effect.  I will just have to be patient.

As mentioned, Margaret and I have just had a holiday, this time to Croatia.  I had visited the area several times with my parents when it was part of Yugoslavia.  Now the various states have become independent of each other following the 1990s Balkan conflict.  Our holiday started less than well with a delayed Easyjet departure from Bristol to Split.  We arrived just 2 minutes short of 3 hours late.  This had caused problems as we were due to meet up with another UK flight before being driven by coach for the 1 hour journey to our hotel in Vodice.

Waterfalls in the Krka Valley (Click to enlarge)


The next day, all was well and we thoroughly enjoyed a visit to the Krka Valley National Park.  This comprised many linked boardwalks through woodland and over multiple streams.  After a snack lunch we were treated to a boat ride before our return to the hotel.




The next day featured a visit to the city of Split and a guided tour of the remains of the Diocletian palace.  Sadly this and the free time in the city was marred by huge crowds (probably resulting from cruise ships).

Our fourth day included a trip to the town of Mostar (over the border in Bosnia).  Prior to the breakdown of Yugoslavia this was simply a two community town with Muslims separated by a river from Christians.  During the fighting, the bridge which linked the two communities was destroyed.  It was subsequently rebuilt and the town has become a magnet for tourists (like us)

The Bridge at Mostar (Click to expand)

Breaking away from the crowds, we were fortunate to find a restaurant with this magnificent view of the bridge.  We even witnessed the practice where men jump from the bridge to the river nearly 79 feet below.

Sadly the town also displayed several buildings pock-marked with bullet and shell holes.



After Mostar, we travelled by coach to Dubrovnik again passing first into and then out of Bosnia.  The border checks were excruciatingly slow.  Here we stayed for the remaining four nights and visited various destinations including entering Montenegro and also the city of Dubrovnik itself.  Again, and sadly, the city was overloaded with tourists and again probably due to the presence of cruise ships.

After a trip which included many wonderful sights, but also excessive crowds, we were driven back to Split for our return flight to Bristol.  Easyjet, or more precisely the handling agent DHL then delayed the return of our baggage. Rant over !

We must accept finite disappointment,
but never loose infinite hope.
Martin Luther King jnr

KBO and Keep well
Stephen