Maintenance

During last week, I again attended clinic.  Having now completed two cycles of Consolidation I can, at last, proceed onto Maintenance.  The last two months, just as I predicted, have been rather less than pleasant being characterised by some side effects.  Hopefully they will now wear off.  Maintenance simply involves taking the trial drug on days 1, 8 and 15 of each 28 day cycle.

Once I'd had a blood test, the consultant prescribed me for the first cycle.  It also became clear that I must succumb to yet another bone marrow biopsy - oh joy.  Next week I have my last pentamidine then life will simplify.

Now over 20 years old, our three climbing roses (Princes Trust) continue to delight us.  The first blooms are just beginning to show.  Soon the plants will be covered with fragrant blooms.  The only problem will be the weight of the flowers requiring some judicious supporting









Next week, as I approach the ripe old age of 70, I shall retire from being a magistrate.  More accurately I shall "be retired" since that is what the rules currently require.  To be fair to the system, I have always known this.  I shall certainly not miss the commute into Bristol but I will miss the role.  It has been both challenging and rewarding.  It has also been a privilege to be given the ability to change someones life.  I shall miss the quality of the people on whom the court depends: The witness support volunteers, The court ushers who have to deal with witnesses and defendants (some of whom can be hostile), The Legal Advisors who do their best to keep us lay magistrates within the law, and of course my JP colleagues. I shall certainly miss this and have already started to look for similar positions.

The purpose of life is to live it, to taste experience to the utmost,

to reach out eagerly and without fear for newer and richer experience

Eleanor Roosevelt

Keep well

Stephen

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