Just been diagnosed with Leukaemia

So a pretty tough week all in all initially coming to terms with it all, prognosis is actually pretty good, caught it early and all. Odds are very good for me being around for a very long time and being able to see my little boy (2 years old) grow up.

I get the impression that if somebody said you’ve got to have a Leukaemia, you’d pick this one.

Bit of a long shot as it’s fairly rare (1:100,000 ish) but anybody on here have it or know anybody with Chronic Myeloid Leukaemia?

I’ve been told once off Chemo and it’s under control\in remission and I’m on the inhibitor drugs, I should be able to lead “a normal life”. I’ve told the Dr’s I’m pretty active normally running and cycling etc and they’ve said that should be fine but I’m not sure the registrar fully understands what normal for me is, Marathons now and again, 100+ mile bike rides, Long Adventure Races etc…

Yeah I know I need to speak more to my Dr’s which I will when I’m in in the next few days (and due to see the consultant), but just after any real world experiences if possible. I’ll probably drop in to Macmillan centre in the hospital too when I’m there.

Thanks in advance

All the best with that Keith

Good luck dude all my best wishes for a long and healthy future.

best wishes mate, hope it all turns out good for you.

oooff, that’s a kick in the goolies Keith. Full steam ahead though. You’ll be out the other side in no time. A friend’s son (down you way actually) is in full remission and right as rain again. Good luck to you and the gang.

Yep, nothing to add I’m afraid, but I share Brant/Pigface/Ton’s sentiment.

No answers for your questions…

But the very best of luck !

No experience sorry fella, but chin up and give it hell. 🙂

No useful information to give you but I hope treatment goes well and you can carry on as you were afterwards.

You seem pretty upbeat to me considering, i think that is really important to stay positive, good luck and all for the future and spend as much time as possible with your lad!. This place seems pretty good when people need a bit of help so dont be afraid to ask! ( dont ask me to do a 100 miler BTW unless im in a car! 8) )

No experience but all the best. 🙂

BTW- any environment/factors that you feel led to this?

Well that puts my shit Monday into perspective. Good luck to you mate I’m sure you are in good hands.

One of my colleagues was diagnosed with that earlier in the year. The first couple of months were harsh as the initial treatment and medication regime was sorted out, which it has been for months now.

They get a bit tired from time to time but that seems to be lessening and seems to be the only side effect they really talk about, although they don’t do anything like the level of activity you’ve listed.

They expect to be around for decades to see their kids grow up. I hope you can get to that level of confidence too Keith – good luck.

Good luck and best wishes for a good outcome.

cheers guys, yeah it’s rubbish but could be much worse. I’ll be on some drugs for the rest of my life and need regular checks but once it’s under control we’re hoping for things to be ok really. Initial Hugh! shock was tough, a few days with a lot of tears but I think we’re more or less over that now, just trying to crack on and deal with kicking it’s ass and life as normal as we can.

Hora – nope none just a completely random genetic mutation in the stem cells in my bone marrow, just S*** luck.

Really sorry to hear that but it does sound the best of a bad bunch. Fingers crossed for you

To the questions about sport, I recall that Geoff Thomas had the same as you and he’s been pretty active since – with cycle events being the thing that jogged my memory

http://www.amazon.co.uk/Riding-Through-The-Storm-Fitness/dp/0752876147
http://www.manchestereveningnews.co.uk/news/greater-manchester-news/football-star-geoff-thomas-and-his-chain-691129
http://www.cyclevox.com/speakers/geoff-thomas/

In 2005 he got on his bike and cycled the 3500 kms of the Tour De France route. His experience is recounted in his bike “Riding through the storm”. He has completed the London Marathon, New York Marathon and cycled London to Paris on a number of occasions.

cheers OldBloke, that’s promising news, yeah getting tired too atm but my blood make up is screwed up atm. Thick from abnormal white cells and depressed red\haemoglobin and platelets so bruising far to easily too

cheers nemesis that sounds great, might be reading that soon

GWS Keith

I should be able to lead “a normal life”. I’ve told the Dr’s I’m pretty active normally running and cycling etc and they’ve said that should be fine but I’m not sure the registrar fully understands what normal for me is, Marathons now and again, 100+ mile bike rides, Long Adventure Races etc…

In my direct experience this sort of thing will be considered “extreme” by plenty of doctors. However, I’d worry less about that right now – you’ll get back there, but focus for now on what’s good for you to get better!

Good luck.

I had lymphoma over four years ago, so different disease but still classed as blood cancer. The treatments are excellent now and getting better all the time, try not to look at survival rates etc. As they are generally totally out of date, and don’t represent the current diagnostic and treatment rates.

I would consider looking at support groups on facebook etc. It can be good to have somewhere to vent that isn’t family and friends! The other thing I would say, is while all the chin up stuff is great, it is OK to feel utterly miserable about what is going on too! You don’t have to be “brave” all the time, and I don’t believe anyone can be, don’t beat yourself up when you have those times – it doesn’t make you weak, just human.

The very best of luck to you.

Good luck for the future 🙂
On a different note I rode the Birmingham Bikeathon yesterday and that was for leukaemia research so hopefully I’ve done a little to help

On 3rd November 2009 I was reliably informed by the top Sarcoma team in the UK that the probability of surviving over a year was less than one percent.

On the 3rd November this year I will be taking the day off, travelling to the same hospital and stapling the sheet of paper with this information on (which I have kept) to the forehead of the ignorant, sweaty, cold **** that gave me the diagnosis..

All the very best with your treatment Keith. Persistence is everything. Let me know if you fancy a cup of tea at any point, should you want to chat.

Regards,

Mark

(Longest living Cardiac and Skeletal AS in history)

That’s awful news, mate. However, CML is one of the more treatable leuks. Using drugs such as imatinib, the condition is well manageable with good, long term outcomes – not saying that the period of initial treatment is all giggles, mind, but as folks have said above, look at Geoff Thomas. I won’t quote a load of stats at you (most of them, joyfully, speak in terms of 5 year survival and you/me/everyone would prefer much longer periods) but many patients that attend our OP clinics (I’m a Biomedical Scientist in haematology) have been tootling along quite happily with appropriate treatment/support for years.
Be positive and keep fighting.

I just want to echo the good, positive sentiments made here already. Stay fit, fight this and beat it.

Good luck Keith, Whilst statistics deal with populations, not individuals, this page at Cancer Research has some good information. There is further medical information that is worth reading here. Imatinib is an impressive therapy, and ibrutinib could be even better.

cheers guys some good info there, yeah I’m in no major hurry to get back to sport but just trying to understand how limiting if at all it might be in the long term.

Still got some things I’d like to tick off, not bucket lists style or anything. Just some events and personal goals\trips\rides which I’ve thought about over the years. Geoff Thomas’ storey seems really positive

Main focus for the moment is to get it under control and into remission and my family.

Tough times and I wish you all tbe best.

I may be wrong but I think Geoff Thompson had leukemia and his book “Riding Through the Storm” is really good. And if you’ve not read it, Lance’s first book is also quite interesting on the cancer fighting side as well, even though we now properly understand why it was called “It’s Not About the Bike”

All the best Keith, hope you recover soon.

I only had radiotherapy, but I found that for about a year I felt more fatigue for a couple of days after activity but could still go and ride for several hours. Your treatment is likely to have very different effects though (i had other stuff like sore mouth, complete loss of taste for a couple of months, hair loss in the area), which is why I suggested trying to find a specific support group where you are more likely to find people who have experience of the treatments you will receive.

That sucks Keith. My best mate was diagnosed with CML on his 30th birthday. He and I will be drinking fine wines next month for his 40th. Chemo was hard, at times very unpleasant indeed (even for me when he managed to projectile vomit into my face from 3 meters away) but ultimately worth it. If you can run marathons and ride 100+ miles, you can do this.

Rubbish news, sorry to hear. The usual fingers crossed and hope it goes well greetings from an utter stranger!
A little advice, Bullheart is an inspiration and has baffled doctors and professionals for a long time, good on him. The advice is;
it is your storey, the chemo will affect you differently from how it affected me or Bullheart or anyone else who has been through it.
You will respond to other treatments in your own way and have your own concoction of medicines.
You will hear and read (try not to google it) about other people who have had this that and the other, that’s their storey not yours. They are them you are you and that is massively important.
Secondly be honest with the people you love, it will hurt them differently to how it will hurt you, remember everyone is trying to look after you, noone is looking after them.
Finally, this was the best thing my wife said, don’t make every conversation about the illness. Keep topics of conversation as normal as you can and it will help your head.
This year I will celebrate 3 years in remission and I since being poorly I have moved house, got a new job and have completed the Dyfi enduro and wasn’t last.
Sincerely good luck and say I love you to the ones you do.

i have nothing of worth to add except i wish you a full speedy recovery 29erKeith.

Really gutted to hear this Keith, you’re probably the fittest bloke I know (not in that way alright) – this disease has no respect for personal attributes. If you approach it like you have done the adventure races, himalaya marathon, 3 peaks yacht race and plenty others I’m sure you’ll have it licked in no time!

We’ll have a special celebration bivvy when you’re back to enjoying (?) cold wet nights in the woods again 😀

A “remission Bivvy” sounds good, cheers Allan

If we’ve caught it as early as we hope and I respond well to treatment then it might not even be all that far away, fingers crossed.

Yep. Wishing you the best of luck. And keep cycling when you are fit enough.

Whenever I read threads like this I have a moment when all I can see is Blackadder Goes Forth, Captain Darling, “on my way over here I made a note in my diary, simply says…. Bugger”

All the very best Keith.

Geoff Thomas had t(9:22) CML. I rode with him on part of his Tour de France ride 5-6yrs ago. A very nice bloke and very fit. I hope that the chemo goes well and you are back hammering the bike ASAP.

Good luck with this challenge – that’s what is!

Positivity is the key here. Keep posting on here whenever you need a wee boost.

All the best

Keith (another one)

All the best to you. My three year old son is on his third month of treatment for lukemia (ALL) and whilst the chemo is grim, the times in between treatment he’s running around and doing what most three year olds do.

All the best man. Keep us up to date with progress on kicking it in to touch 😀