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

DARA Cycle 4

The very next day after I had written my previous post, I received a further CT scan, this time at Weston-super-Mare Hospital.  The result was then interpreted by the consultant team at the BHOC who were satisfied that no further radiotherapy was required.  They thus arranged for me to continue treatment with Cycle 4.  This was to be with "platelet support".  Accordingly the following week I first had an appointment to be transfused with platelets.  The same morning I then received the medications required by the DARA protocol being Daratumumab, Velcade and Dexamethazone.  

Receiving Velcade is noteworthy.  Over 2 years ago I received my second High Dose Therapy and Stem cell Transplant.  One of the outcomes was a lowering of my platelet count.  Platelets are required by the body to respond to any bleeding whether external or internal.  Accordingly my count has been monitored very carefully.  Unfortunately the drug Velcade can further reduce platelet count.  The consultants have thus reduced the amount of Velcade I receive.  This has been insufficient so I've now needed to be given platelets.  Its ironic since I was once a platelet donor!

A week later I again attended for platelets and chemotherapy.  Meanwhile I have now been given access to a Community Nurse Specialist whose role (certainly initially) is to help me with pain control.  She advised me to start a "pain diary" in which I record the relationship between pain medications, activities and my assessment of pain.  She also agreed that my practice of taking oramorph with paracetamol was appropriate.  She then arranged for me to receive a reliable supply.  Little by little I seem to be getting pain under control - thankfully.

My quote this time is:

No pain, no sandwich
(I trust you speak sufficient French to understand this!)

Keep safe, keep well and KBO

Stephen

November Review

I was phoned today by my consultant.  The news was much as expected and not especially good.  Despite having a week off treatment, my platelet count remains stubbornly too low to continue into Cycle 4 treatment.  In addition my haemoglobin count is now giving rise for concern.  He discussed the possibility, once my blood levels have been improved to the level required, I might be recruited into a further trial.  This is most positive although not without some risks.  Looking for good news, my liver and kidney and calcium results remain very good.

Meanwhile I am to have yet another CT scan tomorrow to see what is causing my back pain and whether the myeloma has spread perhaps into my ribs.

Keep safe, keep well and KBO

Stephen

DARA Cycle 3

Cycle number 2 ended almost a week ago.  I'd had my Linac radiotherapy earlier but it became clear that it had not improved my back ache.  In fact the pain was worsening.  I reported this to my consultant and two processes were immediately put in place.  Firstly that I would receive a further dose of radiotherapy lower down my spine.  Secondly, since pain relief with paracetamol was insufficient, I would be prescribed Oral Morphine.  This was quickly delivered to me.  Much to my surprise, when taken, it seemed not to work.  I became aware that I could take it at the same time as paracetamol.  The two medications then seemingly work together.  Thankfully this proved to be the case.  Paracetamol normally only provides relief for 4 to 5 hours but the combination I've found to last maybe 6 or 7 hours.  Accordingly I get pain relief throughout the day and the night.

I've now had the second session of radiotherapy and wait to see if it has been effective.  If so I will be able to reduce the morphine dose and possibly even stop needing it.

The perhaps not-so-good news came from my consultant who advised that my paraprotein level did not suggest significant response to treatment and that alternatives may have to be considered.  Maybe, just maybe, the radiotherapy will have targeted the actual myeloma and not just the pain.

Keep safe, keep well, and KBO

Stephen