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Update …

July 28th, 2019

I spent a few days in Amsterdam week before last.  I had a gaming show and meetings to attend to and also a small break after the induction chemo where I was feeling close to normal so wanted to make the most of it before the next phase of treatment.  Tricia joined me on the Thursday and we had an amazing weekend – was great fun and I came home Sunday rejuvenated. 

Last Monday (22 July) I spent a few hours on a drip being dosed with high dose Cyclophosphamide and a bunch of other bits and bobs to offset its side effects.  I am now self-administering Filgrastim injections until mid next week (31 July) in order to stimulate stem cell production.  

Side effects of the chemo are starting to make themselves known although not too onerous yet – basically loss of appetite so far although there is a rumour that my hair will start to exit at some point. Loss of appetite is in some ways a plus factor!  I do get tired a lot – it’s been like that since I started the induction and I guess will be for some time – I sleep 12 hours min a day and still get tired during the day.  The body is busy …

On Wed 31 July and possibly the following day as well I will have my stem cells harvested (a painless procedure where a machine extracts them from the blood into bags) and then, after a short break, on 11 August I will be admitted for 3 to 4 weeks to have the Autologous Stem Cell Transplant. This involves high dose chemotherapy (Melphalan) to kill the immune system (kills white blood cells etc) followed by reintroduction of my own stem cells to regrow them hopefully without the disease. I will be allowed to return home once I have a certain level of immune system but will be poorly and may get sick easily.

Recovery they say takes 2 to 6 months which is rather a large variance!  I will aim for the 2 month version, but of course I have no idea until I undergo the treatment.

In general, I have weathered the process well so far.  I have been fortunate with a flexible work environment although work has been stressful at times.  At least on the work front I have been surrounded by an amazing and supportive team.  The longest-term side effect so far has been tiredness – when I was on the VTD induction regime I found the end of every week particularly difficult. I also had problems with swelling in the legs and feet and issues with my eyes.  My eyes have this recurring issue where the tear ducts dry up and I have to treat with hot compresses.  I also believe my eyesight is deteriorating although that is hard to quantify.

This week I have had a loss of appetite (which isn’t all bad given that I have put on a lot of weight in the induction process!).  Wednesday is the stem cell harvesting then I presume no meds until the transplant so 10 days to be normal!!!  We shall see….

Overall, I am positive about everything.  I reacted well to the induction with the ParaProtein level falling from 40 to 5 – they say you have to have better than 50% reduction – I say take that!!!!  2.5 is the level at which its relevant (below that its not Myeloma) so 5 is entirely respectable in my view.  To say that I go into the transplant in any state less than slightly terrified would be a lie.  It is an enormous toll on the body and one which scares the hell out of me! At least I will lose some weight (and hair I presume).

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