April 2019 Consolidation

This month's consultant appointment was slightly problematic.  At my previous visit in March, it was not possible to allocate this month's.  In the event I was scheduled to attend one week early.  Whilst this suited the booking system, it did not conform with the trial protocol.  My consultant was able to prescribe for the second consolidation but it could not be issued to me until I'd had a blood test within 72 hours of the start of the cycle. Got it? I therefore had to go back again this week for that blood test.  Fortunately everything was OK so I received the necessary medications to continue. 

I had predicted that consolidation could be hard work and I've been proved right.  Inevitably following stem cell transplant just before Christmas, I've been knocked back somewhat.  For two cycles, each of 28 days, I have to take drugs which produce some side effects.  They are tolerable but I shall be glad when this phase of treatment is over.  It is noteworthy, looking at the blood test results, that each measure is somewhat suppressed - probably caused by the medications.  I just have this last month to get through and then I proceed onto maintenance proper, only needing to take the trial drug; Ixazomib.  I'm sure it will be all worth while in the end.

Meanwhile spring has continued to develop.

We have a loggia which connects back door, our patio eating area and our garden hut.  Some years ago I planted a grape vine cutting and since then have trained it under the loggia roof.  Each autumn, it gets severely pruned and I always wonder whether it will re-grow.  Every spring however the vine comes back to life.

The picture shows just one set of leaf buds.  Yet again nature has asserted itself.

I enjoy the spring more than the autumn now. 

One does, I think, as one gets older

Virginia Woolf

Keep well
Stephen

March 2019 - Great News

The weekend marked the 100th day after my stem cell transplant.  In order for me to be randomised for the next phase of the Myeloma XII trial, it was necessary last week for me to attend the BHOC for tests - yet another Bone Marrow Biopsy (my 6th I think), blood tests, urine test etc.  Following the blood tests in particular, I was phoned by the Trials Nurse to give me the fantastic news that yes, my paraprotein level qualified me for the next phase, and that I had been randomised to receive maintenance treatment.  It was maintenance treatment within the Myeloma XI trial that had benefited me so much.  I could not have wished for a better result now.

Yesterday, then, I attended clinic and saw the senior haematology consultant whereupon I was prescribed the necessary medications for the first of two consolidation cycles (each of 28 days).  The drugs involved are the same as I received at the start of the trial and include the trial drug, Ixazomib, with Thalidomide and Dexamethasone.  The latter two drugs gave me some side effects but the end result will, I'm sure, be worth it.  After the two consolidation cycles I will only need to take Ixazomib thereafter.  This drug is developing something of a positive reputation and would seem to be by far my best hope at the moment.

On non-medical subjects, Spring has finally arrived.  The increased temperature has finally enabled me to do some work on Brabinger (my Mazda MX5 !)

The daffodils had not really waited for spring but our magnolia is now putting on a magnificent show despite having been shaken badly during last week's storm Gareth.

Perhaps the very best indicator of spring is the primrose and we are blessed with many (perhaps reflecting the somewhat wild nature of our garden!

For me this spring has brought the emergence from winter and also the fantastic news about my myeloma treatment.  I feel truly refreshed !

The beautiful spring came; and when Nature resumes

her loveliness, the human soul is apt to revive also.

Harriet Ann Jacobs

KBO

Stephen

February 2019 Update

If you watch breakfast television, you may have seen an inspirational appeal by a young boy that people volunteer as stem cell donors in the hope that his father, who has myeloma, might live longer.  The item identified DKMS as a means to register.  An alternative is, of course, Anthony Nolan. 

This then got me thinking about blood donation.  I had once been a blood donor and then a platelet donor.  Over the last few years I have needed platelets for which I am so grateful.  I have also seen patients who are much more poorly than me and are reliant on blood transfusions simply to stay alive. 

This week I attended my routine clinic.  Since the one in January, I have decided to return to my Magistracy duties and in fact have already sat on three occasions.  It's good to be back !  At this clinic all was well although my platelet count was a little low.  The doctor thought this was likely to be due to me having a viral infection (a cold).  Also confirmed was that in January my paraprotein count had reduced to 7 indicating response to the high dose therapy and stem cell transplant which I had in December.  My November count had been 10 and, when I am reviewed after 100 days to see whether I qualify to remain in the trial, I must have a count lower than this.  Only time will tell.

Since December I've gradually put back the weight I lost during my two weeks in hospital. For now, I'm glad to have returned to fairly normal life.

Winter is the season of recovery and preparation

Paul Theroux

KBO

Stephen

January 2019 Update

I feel slightly guilty having not provided any update for a month.

Since my last post I've had two notable hospital appointments.  Firstly I needed a treatment on a medication called Pentamidine.  Because my immune system took something of a bashing, I am at risk of a form of pneumonia.  Normally I would receive a drug called Allopurinol but the last time I was given it, I proved to be allergic.  I thus need the Pentamidine which is administered by inhalation through a nebuliser.  So far I've had one session which takes about thirty five minutes.  I have appointments for a further three sessions after which I should be clear of the risk.  At this appointment the opportunity was also taken to check my blood.  At a subsequent clinic appointment with my consultant and trials nurse, my blood was again tested.  The results show that everything is as expected with just my platelets still below normal but never-the-less safe.

I now need to decide whether I feel well enough to return to my magistrate's duties.  I am very keen to do so and will speak to the authorities tomorrow.

The next major event in the Myeloma XII trial comes at 100 days after treatment.  This will be in March and in preparation for this I will need yet another bone marrow biopsy.  I think this will be the sixth so I'm perhaps dangerously blase about this!  I will then, if I have responded to the high dose treatment, be subject to further randomisation to see whether I receive maintenance treatment.  Only time will tell.

In the meantime it is perhaps also worth mentioning that the BHOC has been keen to ensure that I exercise as part of my recovery.  To this end I was referred to a Macmillan adviser who took the trouble to contact me and check on my progress - all very positive.

To enjoy the glow of good health, you must exercise

Gene Tunney

KBO

Stephen