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Day Zero

August 14th, 2019 No comments

I was admitted last Sunday night to a delightful double room at St Barts which I shared with a chap who was in a very bad way from the same disease. He made me appreciate how lucky I am that we caught it early. He has been sick for 2 years and only recently did they correctly diagnose the issue.

Monday started with aa 45 minute procedure to insert a PICC line which is basically a semi permanent canula. Basically a tube goes into my arm and 44cm later emerges into the big veins just near the heart. End result is they can put stuff in and take blood tests without making new punctures each time which is a good thing! Apparently it can stay in for 18 months although I don’t imagine its being there that long.

Then came the Methalan along with loads of fluids etc to make it go down with less side effects. 6 bags in all.

They moved me to a single room yesterday – they want to isolate me from infection going forwards. So now I am in Ward 5C Bed 7. I guess I will be here a while.

Today is Wednesday and the stem cells will be re-introduced later today. All the while the white blood cell counts carry on towards zero at which point I will no longer have an immune system. Then the stem cells kick in with new cells and all is hunky dory. The zero day will be around the weekend and will coincide with when I get really sick!

Hair-wise – with it falling out anyway I have now shaved it all off. Picture below with my cap – thanks Brian and Dot!

So all in all I am well and all is good but the storm is on the horizon! Thank you all for your thoughts and those who have visited thanks for coming!

I end with a picture taken by Steve last night. He brought me some medicinal Irish drink …

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Update …

July 28th, 2019 No comments

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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The end of Induction and the start of the Real Thing

July 10th, 2019 No comments

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!!!!

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Cycle 4 and all seems good

June 3rd, 2019 No comments

Visit to the venerable Prof Kavenaugh this morning and he takes the decision that 4 cycles is enough induction – I have been steadily improving (reducing the Para C and other markers) and he is keen to move onto the Autologous Stemcell Transplant. When I came in the Para C was 41 – it was 9 on 20/6 and has now come down to 6. Presumably over this next cycle it will go lower which is good progress and enough for the next phase. In general it should be less than 3.5. So I have one more cycle of induction starting today (5 weeks) after which the heavy stuff happens.

So this cycle ends 8 July after which there is a 10 day period to let these meds escape the body. Then on 22/7 I have chemo to mobilise the stem cells. Stem cell harvesting is 31/7 to 1/8 after which there is a 2 week break before admission as an in-patient for the transplant. The exact date of admission is not yet determined due to availability in the hospital but will be either 11/8 or 18/8 (they like to start on Sundays).

Admission is for 3 weeks. I will be in a sterile ward and visitors will have to wear masks etc. First week I probably won’t be wanting to see anyone but after that would be good to have the odd visitor. Basically on day 2 they wack me with heavy chemo. The idea is to get rid of any remaining traces of the disease with the side effect that it also gets rid of most of the immune system (hence the stem cell transplant)!

Then there is a short delay and they put back some of the stem cells that they took out.

Apparently the 2-3 weeks in hospital and the first week at home are the hardest parts for me. They say it takes up to 3 months to get over the whole thing – shall see about that!

Thank you all (and in particular Dorothy and Tricia) for your support. Induction has been OK – not too many side effects apart from fatigue, but manageable. Not sure I’m really looking forward to the next bit but if it does the job …

There is quite a good booklet on the Myeloma UK website about all this here.

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End of second cycle

April 30th, 2019 No comments

So the paraprotein result is now down to 8 (from 40) which is not bad – it gets slower to reduce as we get lower. Basically 40 at the start, 13 end of last cycle, 11 mid may and now 9. All in the oncologist is happy with the scenario. Seems likely now that it will be 4 cycles not 6 which puts me into late July for the heavy lifting.

Treatment is fine – just have to deal with fatigue and infections are a bit easier to come by – spent the last week with my eyes playing up but happily that’s cleared up.

Its my birthday today so out to celebrate with Tricia and a bunch of friends. Thanks for following the blog!

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End of first cycle

March 26th, 2019 No comments

So this week is the start of the second cycle of induction and a chance to visit the Prof for his take on how its all going. And in his words – “quite remarkable – very rarely see the paraproteins reduce so fast”. In other words its working!

Paraproteins are the measure for myeloma type diseases. There shouldn’t be any, and any significant amount (>30g/L) is indicative of Myeloma. Lower levels typically mean MGUS which is not relevant here.

As you can see the Paraprotein serum is down from over 40g/L when I started treatment to 13g/L. There are still other issues but this at least means the induction is working.

I am in general fine – had a slight cold last week which took a lot longer to shake than usual – but apart from that just more tired than normal. I will continue with these cycles they say for 4 or 6 cycles – it seems that 6 is better than 4 so if I don’t start developing issues I guess it will be 6 cycles (35 days).

Thank you all for your support and messages!

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Going in to Week 4

March 10th, 2019 No comments

Well there is not a lot to tell. The treatment does take its toll a bit. I get tired – super tired towards the end of the week. Friday night I had a bit of a scare with a temp of 38.4 but after calling the help line they told me to take some paracetamol which seemed to do the trick.

Never occurred to me – was thinking it was for pain! But of course we give it to kids for fever so I guess it has dual use.

Nice view of the shard from St Barts

Anyway – this coming Monday is the last injection in this first cycle and then I guess they look at the blood and see how well its working. I see the Oncologist on 18 March so that will be when I know a bit more about what is going on. Until then – soldiering on!

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Week 1

February 26th, 2019 No comments

To some degree uneventful. The meds are strong. I do feel side effects. Velcade injection on Mondays accompanied with 2 days steroids gets the week off to a flying start and little sleep but then later in the week the Thalidomide dominates and wacks me in the evening when I take it – only to wake up at a silly hour in the morning with sleep elusive. And generally tiredness towards the end of the week. At least that’s how the first week went.

Having said all that, pain has decreased to almost gone – no pain killers in general and blood tests yesterday show that something good is happening although they didn’t say much at all apart from they are happy with progress.

The nice “get your meds” ward at St Barts

On the whole I am super positive about everything. The diagnosis is done. I’ve been subjected to more tests than most people so at least there should not be any other “lurkers”. Just got to get a handle on this one and deal with it. Thank you so much to all who have enquired, encouraged or actively engaged in this difficult period – your support means a lot!

Blood status

Not being trained I will not comment much on the above. It would seem an L in front (like top right) means Low. But of course with the meds presumably some things will go the wrong way too so I would not read much into this.

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BETR Goes Multi-Currency

February 21st, 2019 No comments

Today I am excited to bring you news about a potential game-changer for the BETR ecosystem. I cannot over stress how important I think this is for the tokenomics of BETR as a whole.

A recurring question that I had throughout the ICO and after relates to the volatility of tokens against other crypto and fiat and how we handle this in betting.  If I place a $10 bet at 2/1 and then when I win I expect $30 back.  And my perception of $30 is related to where I perceive value.  

While there is a correlation between different sources of perceived value the reality is that in today’s world fiat currencies ($/£/EURO …) still sit at the top of the tree, followed by other assets (eg. gold) or cryptos roughly in line with their size. With the crypto crash of the past year this has hit home to many who were venturing into a new frame of thinking – their perceived wealth took a hit because they denominated it in one or other crypto which lost value against the “real world” fiat currencies.

Enter the paradigm of tethered currencies such as Tether (USDT) which are supposedly secured by “real world” wealth and stablecoins such as debt backed Maker Dai – all striving to somehow achieve a stability in crypto wealth while remaining independent of the thing they are in parity with.

At BETR we are fortunate that our problem is somewhat smaller (in risk scale anyway) in that the length of time for the average bet is relatively small and any stability around the coin only has to survive the time that the bet remains un-resulted. 

So … we have a problem with a potential solution.  

Enter multi-currency betting

We need to stabilise the exchange rate around a bet but ONLY for the period of the bet resulting.  We also need to do this in a way that is robust and secure and it needs to have sufficient collateral to work.  By backing all bets onto a BETR denominated layer pool (remember that “global liquidity pool” we talked about in the ICO?) we have a controlled environment.  We know the ratio of tokens available for exchange hedging against those committed to lays – in real time.  We know the exchange rates on exchanges against existing crypto pairs – in real time. We know the lifetime of a particular bet. We can calculate the volatility of these pairs.  So – we can provide a robust foreign exchange mechanism.

Today we introduce native ETH betting secured by the BETR liquidity pool of peer-to-peer layers. From a betting perspective the change is small – you can now bet in either BETR or ETH.  If you bet in ETH you will be paid winnings at the correct amount in ETH.  Simple. And it works.  Seamlessly.

Looking to the future and this brings an exciting addition to our platform.  We are working on adding cross-chain crypto currencies such as EOS and LTC to the client and hope to have more news on these soon.  We are also, as a part of this change, moving to a technical architecture where we will be able to migrate the core systems from Ethereum if this is the right way to go.  We have been looking at alternatives for some time but the optimal answer is not yet obvious.  And finally – we are in a position where we can relatively easily put in place exchange agents with crypto currency including local tethered coins with local payment presences.

How does it work?

A bettor simply chooses the currency that they wish to bet in.  The system is now multi-currency – bets are be stored in any one of the supported currencies and mixed on the bet history (and of course in the underlying smart contracts).

Every bet is recorded with a fixed exchange rate which is used to calculate the winnings (if applicable). The bet is laid against the peer-to-peer layer at the BETR amount according to this rate.  From the layer’s perspective this is a BETR bet – layers will always lay in BETR and the underlying escrows will always happen in BETR – this is fundamental to the concept of BETR.  Affiliate payouts and any other rev shares will also remain in BETR. The underlying liquidity pool remains in BETR.

Liquidity Management

The nett effect of this will be that net losses in other currency betting will require further BETR being used in the system.  These will be sourced from treasury reserves and by buying on exchanges.  Ultimately this leads to an influx of liquidity to the BETR system.

Day 1

February 20th, 2019 No comments

So for a while my days begin with loads of pills. Most of them are there to offset each other ironically! I feel fine – all is good. My next appointment is next week monday for the second Velcade dose and blood tests when they start to see what effect this is all having.

Its going to be a long road and I won’t bore you all with the routine. Dorothy managed to persuade Ceeri to repaint most of the apartment which is great as I may spend more time working at home to avoid germs on the underground. Painters are in there now.

More updates as and when. Feel free to share password with friends and family.

Breakfast of champions!
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