Just been diagnosed...
 

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[Closed] Just been diagnosed with Leukaemia

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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


 
Posted : 22/09/2014 8:55 am
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All the best with that Keith


 
Posted : 22/09/2014 8:56 am
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Good luck dude all my best wishes for a long and healthy future.


 
Posted : 22/09/2014 8:57 am
 ton
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best wishes mate, hope it all turns out good for you.


 
Posted : 22/09/2014 8:57 am
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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.


 
Posted : 22/09/2014 8:57 am
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Yep, nothing to add I'm afraid, but I share Brant/Pigface/Ton's sentiment.


 
Posted : 22/09/2014 8:58 am
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No answers for your questions...

But the very best of luck !


 
Posted : 22/09/2014 8:58 am
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No experience sorry fella, but chin up and give it hell. 🙂


 
Posted : 22/09/2014 8:59 am
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No useful information to give you but I hope treatment goes well and you can carry on as you were afterwards.


 
Posted : 22/09/2014 9:01 am
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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) )


 
Posted : 22/09/2014 9:01 am
 hora
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No experience but all the best. 🙂

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


 
Posted : 22/09/2014 9:02 am
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Well that puts my shit Monday into perspective. Good luck to you mate I'm sure you are in good hands.


 
Posted : 22/09/2014 9:09 am
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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.


 
Posted : 22/09/2014 9:10 am
 Yak
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Good luck and best wishes for a good outcome.


 
Posted : 22/09/2014 9:13 am
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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.


 
Posted : 22/09/2014 9:13 am
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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.


 
Posted : 22/09/2014 9:14 am
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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


 
Posted : 22/09/2014 9:17 am
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cheers nemesis that sounds great, might be reading that soon


 
Posted : 22/09/2014 9:19 am
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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.


 
Posted : 22/09/2014 9:19 am
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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.


 
Posted : 22/09/2014 9:20 am
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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


 
Posted : 22/09/2014 9:35 am
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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)


 
Posted : 22/09/2014 9:36 am
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That's awful news, mate. However, CML is one of the more treatable leuks. Using drugs such as [i]imatinib[/i], 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.


 
Posted : 22/09/2014 9:44 am
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I just want to echo the good, positive sentiments made here already. Stay fit, fight this and beat it.


 
Posted : 22/09/2014 9:46 am
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Good luck Keith, Whilst statistics deal with populations, not individuals, [url= http://www.cancerresearchuk.org/about-cancer/type/cml/treatment/statistics-and-outlook-for-chronic-myeloid-leukaemia ]this page[/url] at Cancer Research has some good information. There is further medical information that is worth reading [url= http://www.patient.co.uk/doctor/chronic-myeloid-leukaemia-pro# ]here[/url]. Imatinib is an impressive therapy, and ibrutinib could be even better.


 
Posted : 22/09/2014 9:54 am
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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.


 
Posted : 22/09/2014 10:45 am
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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"


 
Posted : 22/09/2014 10:51 am
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All the best Keith, hope you recover soon.


 
Posted : 22/09/2014 11:05 am
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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.


 
Posted : 22/09/2014 11:06 am
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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.


 
Posted : 22/09/2014 11:08 am
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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.


 
Posted : 22/09/2014 11:48 am
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i have nothing of worth to add except i wish you a full speedy recovery 29erKeith.


 
Posted : 22/09/2014 11:50 am
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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 😀


 
Posted : 22/09/2014 12:01 pm
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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.


 
Posted : 22/09/2014 12:55 pm
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Yep. Wishing you the best of luck. And keep cycling when you are fit enough.


 
Posted : 22/09/2014 1:27 pm
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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.


 
Posted : 22/09/2014 1:27 pm
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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.


 
Posted : 22/09/2014 1:30 pm
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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)


 
Posted : 22/09/2014 1:34 pm
 bgd
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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.


 
Posted : 22/09/2014 1:35 pm
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All the best man. Keep us up to date with progress on kicking it in to touch 😀


 
Posted : 22/09/2014 7:22 pm
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Never a good thing to hear, all the best with the recovery


 
Posted : 22/09/2014 7:26 pm
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Good friend had exactly that. She is now back to normal and you'd never know the difference. If anything she's quicker now...


 
Posted : 22/09/2014 7:33 pm
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Wishing you all the best OP!


 
Posted : 22/09/2014 8:01 pm
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Keith, very sad news

For my sins I'm a Tranmere Rovers supporter, one of our players was diagnosed with the same last year and he's back playing professional football within a year.

Not quite the same story as Lance but fingers crossed you'll be back doing those marathons and 100+ mile rides soon

cheers


 
Posted : 22/09/2014 8:21 pm
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Good luck, stay strong, dont know what else to say. If a bunch of stw bullshitters and work avoiders can help, be sure to ask.


 
Posted : 22/09/2014 8:46 pm
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Not leukaemia directly, but I can relate to you.
My 2 year old son was diagnosed with Langahan Cell Hystiocytosis at the start of the year -25 cases a year. He has been having chemotherapy since then and is currently having it daily with a larger dose every 3 weeks. He has a drug (amongst a cocktail of others) that is also used for leukaemia and will keep having it for at least the next year or so.
He has had numerous blood transfusions due to his platelet count and regularly stays in hospital.
Macmillan have been great for him too.

Basically the drugs are working and I have seen an improvement I only prayed for.
As obvious as it sounds, when it gets tough, look at your 2 year old and keep going for them, you WILL get through it.
I wish you the best of luck to you and your family.


 
Posted : 22/09/2014 9:05 pm
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The wife is a haemeo oncology nurse, and the MIL was diagnosed and beat leukaemia about 10 years ago. Stay positive, people will do all they can. Good luck.


 
Posted : 22/09/2014 9:09 pm
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Shit 🙁

Fingers crossed for you


 
Posted : 22/09/2014 9:14 pm
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Good luck, You can do it.


 
Posted : 22/09/2014 9:20 pm
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No advice whatsoever but best of luck with the treatment and I hope it's not too disruptive to enjoying your ongoing daily family life (the twos are great!).


 
Posted : 22/09/2014 9:29 pm
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I've nothing useful to add.

But good luck fella, get it beat.


 
Posted : 22/09/2014 9:31 pm
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Best of luck with this Keith, and everyone else who's going through similar times.


 
Posted : 22/09/2014 10:15 pm
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All the best Keith.


 
Posted : 22/09/2014 10:24 pm
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I wish you the best of luck for a speedy recovery.

But honestly, from reading how positive you are about it all, it'll be your attitude that pulls you through this. You've got the right outlook and I'm sure all will be well.

Keep your head down and fight one battle at a time and before you know it you'll have the all clear.

Good luck!


 
Posted : 22/09/2014 10:39 pm
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Sorry to hear of your diagnosis and best wishes for a swift and full recovery!

Hopefully you won't need this, but should your circumstances lead to financial difficulties, for example through having to be off work for a long period of time, Macmillan have a partnership scheme with Citizens Advice which can help ensure you and your family get the appropriate financial support during your illness which will enable you to focus on getting better rather than becoming more stressed due to your changed financial circumstances.


 
Posted : 22/09/2014 11:46 pm
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Nothing to add but a hearty, warm "good luck fella!". Its a new challenge and you're gonna win.


 
Posted : 23/09/2014 1:37 am
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Nothing useful to add so I'd just like to wish you good luck with the treatment and keep posting on here.


 
Posted : 23/09/2014 1:49 am
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All the best for you mate.


 
Posted : 23/09/2014 4:24 am
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bugger. get well soon.


 
Posted : 23/09/2014 6:13 am
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Whip it's arse until it leaves and loses the keys. All the best fella.


 
Posted : 23/09/2014 6:40 am
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Thanks again everyone, yep a new challenge for sure. I was just saying to the wife this'll be the thing to kick me up the arse and get me really fit again. Been a slack ish couple of years really with the little one and a house renovation but still managed, amongst other bits and pieces, the RatRace coast to coast last year and a 3 Peaks Yacht Race this year all be it very slowly! We think it was just starting\lingering then, I hadn't trained enough as I'd been ill on the run up to it and it took ages to shake the bug but I really struggled far more than I expected. I felt so guilty for my running partner as I held him up so much, but we finished which was the main thing.

I can't imagine how you guys get through it with your kids, bdg, muppet4 and anybody else. I really don't think I'd be coping so well if it was him. You guys have my utmost respect for keeping positive and your well wishes as well as everybody else's really do mean a lot. Hope your kids kick their conditions too and lead a full and happy life.

In the grand scheme of things it sound like I've got it easy and should be absolutely fine.

I've always donated whole blood and for several years I went almost every month and donated platelets too and have always raised cash with my events for hospices and cancer charities having been affect by it with family. I had to call the blood people the other day to get them to take me off their list but I know for sure I'll be back doing events again and doing my best to raise a much cash as I can for those important causes.


 
Posted : 23/09/2014 8:20 am
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All the best to you.


 
Posted : 23/09/2014 8:22 am
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All the best man.


 
Posted : 23/09/2014 11:24 am
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Not sure if it helps but I had testicular cancer at 29 and then I had malignant melanoma (skin cancer) at 44 and I'm still here and still doing most of the stuff I used to do. Most of the stuff I can't do is more to do with being 49 with a busy job and a family rather than having been ill!

At times it'll be hard to keep upbeat so it's OK to be angry or cry because it's important to remember you've been dealt a shit hand so these emotions are OK.

Best wishes.


 
Posted : 23/09/2014 11:33 am
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cheers, it's a life long thing no permanent cure but very effective drugs to keep it in remission permanently hopefully, but sound like the affects will be pretty minimal once we're there


 
Posted : 23/09/2014 12:20 pm

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