Arthur's Column

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).

After 6 months of shitty medication I am in the wonderful world where I can now look forward to the really shitty thing! Autologous Stem Cell Transplant. Which basically means giving you your own stem cells.

It’s only half the story of course. Why would you need stem cells?

Because they are the building blocks of blood. And in my case it’s the blood that’s not in good shape. So they basically get rid of it.

Melphalan is administered intravenously in a seriously strong dose. It’s only a day but it does the job. All white blood cells die.

Then after a couple of days they give me my stem cells back. The body does what it does – rebuilding the blood cells hopefully without the disease.

All sounds ok. When the immune system has recovered sufficiently I can leave hospital and recover at home.

Apparently it takes up to 3 months to recover from this. Sounds like a seriously shitty thing! Information is scarce. I guess I will provide the truth in my case through this channel.

So here is my timetable…

22 July 2019 – Cylcophosphamide priming – 4 hours of intravenous meds to prepare stem cells

25 July 2019 – start 1 week’s daily Filgrastim (Gscsf) injections – apparently I do these myself (that’s a new one for me!)…

30 July 2019 – medical review and admittance to hospital for stem cell harvesting

31 July/1 August – on machine for 4-5 hours to suck the stem cells out of the blood. Basically involves blood going out of one arm through the machine and into the other arm. Carries on until enough is harvested.

11 August 2019 – admission for the main event. This day is called T-2. It’s a Sunday and on the Monday they administer the Melphalan. Thats the start of the bad stuff. Mid week I get my stem cells back.

They say it takes 3 to 4 weeks for all of this but the nurse tells me I might be out in 2. Basically it depends on how soon my immune system is ready to cope with the world. Then I go home and muddle on while I improve. Hair will be gone and I may lose some weight (there is a silver lining!).

They say it can take up to 3 months or more to get over this stuff. I will be aiming for a shorter solution!!

To say this is scary would be an understatement. I never wished for this or wanted it. I spent the past 6 months on VTD (Velcade, Thalidomide, Dexamethasone) which is not very nice and has side effects which after a while started to wear me down. Now I have to do this. Not nice. But I will prevail. I have to trust the doctors who say this is the right thing. But it sucks! Big time.

Here’s to September and getting better!!!!