January 2023

Nearly all good News !

At the end of last month I returned to the BHOC to try Immunoglobulin again.  I won't lie, I was extremely concerned that yet again I would react.  Firstly my preference for Privigen had been respected and it was ready for me. Secondly the nurse was so reassuring.  As things turned out, I need not have worried and I was infused without any drama.  

Yesterday I saw my consultant and, yet again, he gave me the news that my paraprotein remains undetectable. My immune system system is still fighting the myeloma.  He did say that my immunoglobulin level remains very low and I must continue with the scheduled infusions.

With uncharacteristic bad timing, in the run up to Christmas I lost my appetite.  Only now is it beginning to return. Luckily I do enjoy a portion of Christmas pudding.

To everyone,  have a very Happy New Year

Keep safe, keep well 

Stephen

December 2022

First the good news!  Yet again at my monthly consultant's clinic I learnt that my myeloma has remained undetectable - my immune system is still fighting the myeloma as if it was an infection.  In many ways it is.

Not such good news:  Last year I reported that I had reacted to an infusion of immunoglobulin.  At the time it had been frightening and I was glad that the problem had been resolved by introducing pre-meds.  Starting last month, I had been again prescribed 6 infusions each to be taken one month apart.  

At the end of last month I attended for the first infusion only to be told that it had not been authorised. Immunoglobulin is apparently very expensive.  A week later I was back and the treatment had now been authorised.  Giving me confidence, I was first given pre-meds and having waited the required 30 minutes, the infusion commenced.  After about 40 minutes I started to react (despite the pre-meds).  This time I experienced chest pain which gradually spread down by torso and onto my upper legs.  Not unreasonably the nurses had to assume that I was having a heart attack.  I was thus subject to an ECG and the doctor was called.  Until he was sure I was not having a heart attack, I was denied further medications.  By now things seemed pretty bleak and included yet more rigor and being sick but the medications slowly brought things under control.  By now my temperature had spiked and I had to wait the required 4 hours before I could receive paracetamol.  All in all a very scary episode.

At this month's consultant's appointment I was encouraged to take up immunoglobulin again with the same brand which I had tolerated after last year's problem. Reluctantly I have agreed but making it clear that I will only try if the correct brand is available.  I confess that I am far from happy but my poor immune system really does need it.

This was the brand of immunoglobulin that I tolerated last year - let's hope.

Always do what you are afraid to do
Ralph Waldo Emerson

Keep safe, keep well and very best wishes for Christmas and 2023.

Stephen

November 2022

I again attended my routine consultant's appointment this week.  Last week I had yet another bone marrow biopsy and I was so very pleased to learn that no myeloma cells were detected.  My last blood test returned the same result.  Truly extraordinary; that after a year I remain is such condition.  I was shown various blood results.  In particular, my platelet count, which had once given such concern, was now very satisfactory.  

My recent cold, despite needing two courses of antibiotic, has still not really cleared up.  Looking deeper at some of my results, the consultant concluded that my immune system, needed to fight such infections, was still compromised.  He has therefore decided to put me on a further course of immunoglobulin.  I've had this before and it comprises six intravenous sessions, once per month.  Each session takes about three hours as reactions are common.  The fact that I am to have this again just shows how much care I receive from the BHOC.

You may recall my intention to harvest our grapes and make something approximating to Port wine.  This I have now done as shown here.  This is my third "colheita" being a Portuguese term for wine of a single year.  

All we have to do now is wait for it to mature.  Meanwhile we have similar wines from two previous years.

No act of kindness, no matter how small, is ever wasted

Aesop

Keep safe, keep well  😀

Stephen

October 2022

My apologies for not keeping my blog up to date.  I should have had a routine face-to-face consultant's appointment but at the time I was suffering a truly bad cold.  In the end it was made over the telephone.  The cold resulted in a course of antibiotics to deal with infected lungs and sinuses. The latter had affected my hearing, making part of my face tender and even influenced my balance.  My GP recognised that the first course of medication was insufficient and so prescribed another.  I now seem to be finally on the mend after three weeks.

This month is significant for two reasons:

- I was first diagnosed in October 2011 so this is the eleventh anniversary
- I received my CAR-T cells exactly one year ago

I have so very much to be thankful for.

I never met a bitter person who was thankful.
or a thankful person who was bitter.
Nick Vujicic

Keep safe, keep well  😀

Stephen