ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I’m 39 years old, no history of illness, Ironman finisher who has been diagnosed with myeloma. Did not see this coming. This blog summarises my journey from unexpected diagnosis through the treatment path. My aim is to use myeloma as a catalyst for living a better, more fulfilling life and documenting the changes I am making in all aspects of my family and work commitments.

Reality Laid Bare

So Jenn and I went to the Christie in Manchester today for the first time. Obviously I’d rather not be making the trip but it is a superb facility with a fantastic reputation; I can see why.

Very modern, staff all on the ball and we came away with a very clear view on how the next 12 to 24 months could play out.

Its becoming a game of numbers, so for the doves and hawks out there feel free to chip in with your opinion; go low risk low reward or position balls on the chopping board and place all chips on black?

To summarise where I am before going into the more salient details discussed today, I’m into week 2 of this 3rd round of chemo. Going well so far. All pill based so no long stints in hospital and only mild fatigue as a side effect (so far). Long may this continue. My back continues to improve but squats and deadlifts are still some way off.

A glimmer of positivity that we spoke about today with the consultant, is that regardless of how successful this block of chemotherapy is, they will progress with the stem cell transplant. If it works, which is the preferred outcome, we are looking at 4 months on this program then the transplant some time in April/May; if there is no further fall in paraprotein after 2 rounds, then February/March.

The big decision is which type of transplant to go for.

I’ll caveat the discussion at this juncture with a rather sizeable condition; 2 of the 3 options require that I find a donor match. The good news is that the register is global so the net can be cast very wide indeed. But a match is still a challenge so it is by no means a given. The team at the Christie started the search today so in the next 4 week we should know if options 2 and 3 that I’m about to set out are actually on the table.

Option one is called an Allogenic Stem Cell transplant. In a nutshell, they take my own cells, filter out as many of the nasties as they can (hence the aspiration of a very low paraprotein number in advance of the op) then hit me with a very heavy dose of chemotherapy to kill, well, pretty much everything. Recovery takes between 3 to 6 months and the pros are that reintroducing your own cells minimises the likelihood of rejection and therefore, subsequent graft vs host complications. The transplant can actually reject your body as it views the host a foreign (very unlikely with an Allogenic transplant), so not only are you fighting infections with antibiotics (because your immune system is heavily compromised) but you need additional immunosuppressive  drugs to sedate the angry grafted cells. This carries a 1% mortality consideration but on the flip side, the myeloma is likely to return sooner so further treatment would be required.

Option two is a full donor transplant i.e. they don’t use my own cells with a view to completely replacing my immune system (I know! crazy right?! Got to love science) with a new healthy one. If it works it is as close to a cure as currently exists and although they expect the myeloma to return at some point, remission is expected to be much longer than allogenic. Ideally multiple years which means fewer chemo sessions over a period of time and less consequential damage that does to the body. But, there are of course catches.

This procedure carries a 30% mortality risk

Note here that all stats quoted are not really aligned to people of my age as there are not too many of us. But the jump from 1% to 30%, even if you apply a factor to take age and fitness into account, is still significant

Graft vs host is likely; it is the aggression that is the primary concern. Some of the side effects are impaired eye sight and damage to the skin, liver and gut. Sores in your mouth and throat and very very tired. It can also take up to 12 months to get over.

Also need to note that I am on the edge of an age where they will consider this as an option. If they find a donor and I don’t take it, it will not be on the cards in a couple of years. Some places wont even offer it if the donor is not a sibling so this is a now or never decision. (pressure!)

Option three is a hybrid of one and two where they mix my cells with a donor. It is milder than two but tougher than one and carries a 10% mortality risk. It should give a longer remission than one but shorter than two and takes 6 months at least to recover.

A lot to take in which is why I wanted to get this post drafted today while the information is clear in my head. I hope it comes across and makes sense for you all.

Right now there is still a lot to take in and ruminate over. If a donor can’t be found then there is no decision to make; I’m taking contestant number one out to dinner.

But if they can, the reward of two, despite the challenges does look like a goer. Then I’m thinking about the time factor band the odds. Do I want to risk it going wrong because once it starts, that 30% is all managed by doctors and drugs. However 70% actually sounds like decent odds. Do I want to risk losing my family and friends on a very bold throw of the dice? Then again, is life on chemo really a good quality of life when every round damages you further? At least it is time, being blunt, alive. Risk vs Reward.

The above scatter gunned paragraph alone tells you how much of a head spinning thought process this already is.

I’ve spent my career in finance managing and minimising risk for my business and yet here I am, considering playing roulette with something infinitely more valuable than money.

Time and its value is ultimately, the true arbiter of this decision. I just have to weigh up how much I am willing to risk in the pursuit of  a long, healthy and happy tenure of what is most important; longevity with my family and friends.

 

 

Many of you have offered to be tested for donor matching which is amazing. The doctors won’t do individual tests outside of siblings to line you up directly for me but for anyone interested in registering an interest, you sign up to the British Bone Marrow Registry. 

https://www.nhsbt.nhs.uk/donate/

You have to be  aged between 17 and 40; check out the website for all the details. It’s a simple blood test so minimally invasive. And you never know, I may be indebted to you for the rest of my life! Imagine the freebies you could demand!  

 

 

 

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4 Comments

  1. Mike and Sue Day 7th December 2017

    This is a lot to take in for me. Lord knows how mixed up you must
    feel. You explain it well with little emotion considering your situation. I admire your stance on this and your apparent resilience when you must feel mentally and physically severely debilitated. Chin up, we are with, anything we can do let us know. Love to all.
    M & S

  2. Harry Vanson 8th December 2017

    Pete – I was diagnosed with non-Hodgkin’s lymphoma last year, and finished chemo and radio therapy earlier this year. I remember vividly the head spinning nature of the options when they are laid out in front of you, and facing up to the potential consequences of any decision you make.

    This blog is probably one of the best things you could do – it’s so important to talk about cancer, the identification, treatment and (fingers crossed) eradication. If at any point you ever want to talk to someone who’s been in the same boat, reach out to me.

    I was treated at the Christie, they are incredible. The only fault I could find was the movie selection: I didn’t feel the need to watch the Christiano Ronaldo Story whilst being drip fed medical poison! If you feel up to it, you should try the Japanese deli across the road!

    Chin up mate, grab cancer by the balls, and good luck!

    Harry

  3. JIM & SHEILA 8th December 2017

    Well Pete, another inspirational, and for our part, educational detailed blog for which we thank your frankness. Further inspired by the positive comments about Christie Hospital, Manchester – and they, combined with The Countess, are really going all out to clarify the options and move your treatment forward. In the meantime, our thoughts are with you, Jenny and the boys…..
    The Smarties

  4. Mike McCleave 8th December 2017

    Hi Harry
    I am Peter’s dad and just wanted to say many thanks for your comments it really is appreciated. Best wishes Mike and June (mum).

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