DARA Cycle 7

Very little to report.  I spoke to my consultant today and my treatment continues with cycle number 7. One of the measures called serum free light chain has continued to fall indicating at least some response to treatment.  My paraprotein levels also indicate some response.  Importantly the myeloma doesn't seem to be doing me any damage and my pain levels have been brought under control.  

My most recent blood test indicates that I will require a further platelet infusion on Friday but at least I already had an appointment booked for that very purpose.  Soon (in six weeks time) I will have completed cycle 9 and will move to treatment that only involves Daratumumab maintenance and importantly not requiring Velcade (which rends to lower my platelets).  I will then be able to start the process of building my platelet count back up again.

Keep safe, keep well and KBO

Stephen

DARA Cycles 5 & 6

 It's been a while since I provided an update so this covers two cycles. Cycle number 5 went without much incident.

Cycle number 6 started with the first indication that the Bristol Haematology and Oncology Centre (BHOC) might be starting to show signs of strain due to Covid-19.  On the 28th December I attended for a blood test as normal. The following day instead of being phoned by one of the three consultants, I was phoned by a doctor who did not know my case and took some time to self-brief.  Not really a great problem though and I was prescribed for Cycle 6

Treatment started on 1st January.  My treatment requires that I have a minimum platelet count of 30 so a blood test was required.  This showed a count of only 19, thus a transfusion would be required.  It seems that the duty doctor was initially reluctant to get involved (presumably too busy?) - much to the surprise of the nurse.  Eventually platelets were prescribed and infused.  Then much to everyone's surprise, the doctor then required a further blood test.  Inevitably the count had now risen, this time to 58.  All in all that day I had three blood tests ! I did however eventually get the intended treatment.

Yesterday was day 4 and required that I attend for further treatment.  My appointment time had been previously changed and when I was not called in for treatment I wondered what had gone wrong. It seemed that there wasn't a "chair" for me and yet they knew about me. After a delay I was taken into the chemo unit.  My assigned nurse was very apologetic but he had been re-assigned from inpatient duties and thus was perhaps not fully conversant with procedures.  It took some time for him to accept that I first needed a blood test to check my platelet count.  Fortunately when tested the count was 39 so treatment could proceed.  So much effort for one simple injection.

The platelet count of 39 yesterday does not bode well for my next appointment on Friday but at least I have two appointments booked- one for platelet infusion and the second for treatment.

It is perhaps significant that I always write off the day when needing to attend for treatment. This way I hopefully avoid frustration.

Expectation is the mother of all frustration

Antonio Banderas

Keep safe, keep well and KBO

Stephen