I'd give you a hug if I could stand close enough.
Just been given some terrible news frankly.
It’s likely to be an aytypical type of CML, not AML.
Bone marrow transplant stuff basically
Fack!
Bone marrow transplant stuff basically.
aw bollocks :(. I really hope that good news comes your way really quickly. You are doing an amazing job at dealing with it but it can't be any fun at all
So no chemo? Or chemo as well?
Shit man, that's not good to hear. Hope they can give you positive news at some point
Ah shit man! Sending virtual hugs Poop! Wishing you all the best and give this thing a kicking.
Shit, sorry to hear that. Hope they are able to find a donor sooner than later!
After I was diagnosed, I was put on a medication called Glivec which at the time was brand new on the NHS, basically what they called a "magic bullet" drug that stops the CML progressing any further. I was on that for about 6 months before they found a match for me (none of my family were) and then I went through the transplant process.
I'll be honest, it was pretty rough but the worst part was the boredom. About one week of intense radio and chemotherapy and then 5 stuck in an isolation room waiting for the transplant to take and the immune system to recover. Didn't have easy internet access or TV streaming at that time so I read a lot of books and played PS2 for most of it!
The transplant wasn't invasive, just a blood transfusion, but because of the chemo/radio it feels like you have a real bad hangover and flu at the same time, all the time. It will give a really sore throat too, which meant for about two weeks all I could eat was protein milkshakes to keep my weight up. Then about 6 months of a "clean" diet, basically no fresh food, just microwavable meals so they can be sure that no bacteria get into your system. That eases up over time once your blood work shows improved immune strength.
Took me about 2 years to get back to "normal", lost a lot of fitness due to being stuck inside and being tired all the time at the beginning, but afterwards I was probably in better shape than before. I definitely made a few life changes after as well, eating better and exercising more and just generally trying not to take things for granted so much.
I know it sounds horrible, and it is, but it is survivable. I'm here 20 years later because of the excellent NHS care I received and I'm sure the technology and medicine have only improved since my time.
Please feel free to ask on here or PM me if you want to ask me any questions!
Cheers, Leo
Heck poop, all best wishes
****. GWS Poop!
This thread keeps getting more and more sobering. It's Friday afternoon, though. Is it, er, too early for a stiff drink?
Crap… We’re all behind you
Dude that's poor.
Get well soon
Oh man, what was a meant as a light hearted thread keeps getting worse. One day you will joke about this. Get well as soon as possible. Virtual hug sent.
Well that is crap. This thread is just a complete rollercoaster.
Best wishes Poop
Bone marrow transplant stuff basically.
Thats two birds one stone stuff surely?
Erection jokes.... Lol
Edit: och bum i forgot the important bit. Obviously I'm sorry to hear the crap news. BEst of luck with the treatment!
Jeez man, that's a shit one. Thinking of you.
That's a lot to take in a couple of days. Get stuck in and kick its arse.
The STW community will be here to help out and take the piss whenever necessary.
Sending healing vibes, brother. 👊
Give it a good hoofin', Poop!
Get well soon.
Crap… We’re all behind you
You wouldn't want to be in front would you?
Crap news kick its arse
You wouldn’t want to be in front would you?
🙂
Hope the jesting helps Mr Scoop. Wishing you all the very best 👍
Jeez man, that’s crap. Let’s hope they knock it on the head. Oh…
Hope the jesting helps Mr Scoop.
Oh seriously, you guys crack on, if ever I need some decent innuendo/penis jokes, this is the time.😁
Had to tell my son today, that was brutal. Not about the penis, the other thing. Mostly held it together, then had to say I'd call him back as a doctor came in for a chat. When I went to talk to her a kind of primitive crying howl came out. Just animalistic, I apologised to her, though she understood of course.
Thanks for your posts and it's already given me a decent feel of what I might need to expect. Was your CML "Atypical" that's what they think mine will be confirmed as being. It means the drugs that now exist for "standard" CML likely won't work, hence the bone marrow route. Trust me to be niche.
I need to post up about the Groundhog clock in this room too when I get a chance. I'll take a picture.
Son bringing much needed care package tomorrow. Mainly underwear, I'm genuinely excited!
All the best @poopscoop. What a ****ing nightmare 😳
Too old to give you my bone marrow sadly, but if i could, I would 👍
Hope you give it a righteous kicking.
The median overall survival (OS) of aCML patients is between 12 and 25 months
Just taken that from one case study of patients and seems similar to others carried out globally.
That's with treatment.
I might literally be a dead man walking. I wont dodge this bullet, I can't win this one. Its a stacked deck.
My poor son, he's only 24 with a 2 year old, this will be tough on him.
so sorry to hear this matey, do your best to kick its arse and stay strong for yourself and the family. **** cancer
It can't be beaten, I might see 2 years with treatment but a lot of that 2 years will be in hospital recovering from that treatment. What's the point in that?
Don't be average then.
Can only again offer moral support and hopefully non knob related gags though I'm not promising that one won't poke up in conversation
Wishing you the very best and hoping that your son is a suitable match. Do not fixate on overall survival curves. Treatments advance and survival improves. Trials are often poorly controlled, and median means half have bettered that statistic, but doesn’t say by how much.
Damn. I came here to add some cock joke but in the light of this, please don't give up. People do extraordinary things, in science and confounding science. Best of luck mate.
Only just caught up with this thread since yesterday, I really wasn't expecting the updates to be as they are. My very best wishes Poop, I truly hope that you get some more positive news instead of probabilities.
I currently know a couple of people very close to me who have gone from extremely poor prognosis to actually very unexpectedly positive responses to treatment. Both have in effect what are incurable conditions but which nevertheless have, as the result of treatment, gone into retreat.
You have been given an enormous amount of unexpected information in a very short period of time, I can't imagine how hard it must be to try to process it all. I hope that you are receiving the support which you should be getting and are entitled to.
Well,as the Americans say, in times of difficulty.
.
Keep your pecker up.
People do extraordinary things
I'm lost for words, Poops, but I'll latch onto this comment to sum up what I can't.
**** this thing and kick its arse please 👊
When I went to talk to her a kind of primitive crying howl came out.
this has happened to me in the past. bloody bizarre when it happened. it’s made me worry about crying in public in case it happens again.
do everything that the dr’s tell you to and you’ll get the best results.
and do you still have a hard on?
i’m sure someone has already said this, but this tread is useless without pictures.
It can’t be beaten, I might see 2 years with treatment but a lot of that 2 years will be in hospital recovering from that treatment. What’s the point in that?
Just checked back in on this thread expecting some more jokes etc. Sorry that’s really shit news. But certainly it’s raised awareness of something I knew nothing of !
Unfortunately I happen to agree with your above statement. Listen to the experts and make your decision about quality of life v length of life.
As he pushed in the rectal thermometer, I felt myself getting a painfully hard and obvious erection
"Maybe you should wait outside while I examine your dog," the vet said
I hope this isn't keeping you up at night!
On the practical side.
My dad who has had two flavours of cancer was really positive about the maggies centres, i'm not sure if thats a Scottish thing or not but definitly take whats offered. meet people under similar circumstances met people who are more advanced and meet people who are on the mend.
Listen to TiRed about stuff like statistics and survival rates.
At the very worst you have an opportunity to go well, see the people you need to see and them see you.
@poopscoop Shit man, not good, but please try not to think about the absolute worst. Like TiRed said, trials can be weird and technology and treatments improve just about every day, so the possibilities for beating this exist and will get better.
Apart from that though, every extra ****ing day that you can communicate/see/be with your son and his kid is worth it. No giving up, please. I’d say we want to keep making shit jokes, but we just want you to be around.
Similarly to what Josh Vegas has said, a lot of people I know have had help with cancer from maggies.org at what ever stage they are at with it. There are over 30 of them now, attached to various hospitals that have major cancer treatment facilities.
It can’t be beaten, I might see 2 years with treatment but a lot of that 2 years will be in hospital recovering from that treatment. What’s the point in that?
That is a decision that imo you are not ready to make right now. You need time to process and more information.
Leave that decision aside for now and revisit it later
I know folk who decided for treatment. I know folk who decided against it.
As above i found the Maggie's counsellor very good in helping me organise my disordered thoughts. Professional help does help.
To decide not to have treatment is very hard but can sometimes be for the best. My Julie refused all treatment. Her odds were much worse than yours tho.
You can only make the best decision for you but again i doubt you are in a position to make it now
If you want to doscuss off forum pm me. Ill try to get back to you promptly
So sorry to read this. You’ve a lot to take on board at the moment. Keep posting on here and don’t give up. You took on Ling, you can take on this. £500 plus VAT this bastard.
Other bit of advice.
Be selfish. Its all about you now. Want to spend all your money on coke and hookets? Do it. Whatever path you take do it for the right reasons.
+1 for what TiRed said - stats can be a bit misleading, and you may not be the typical patient for this condition. A quick glance at one source shows that median age at diagnosis is reportedly 70-73, I'm guessing you're significantly younger than that, so that has an influence on your potential individual outcome vs other patients.
It's a lot of information to process out of the blue when you're already in significant discomfort. TJ is right, take your time, talk to someone independent.
We're all rooting for you.
We’re all rooting for you.
+1. so sorry to hear this poopascoop. Listen to TiRed and TJ, use us for support as you need.
Jeez poopascoop that's a rollercoaster you're on, defo echo TJs comments, look after yourself
We’ve all got your back @poopscoop /Frankencock. There’s sensible stuff here as well as knob jokes. Mostly knob jokes, though. 😜
keep the faith and reach out if we can help.
Anyone got a Therese Coffey poster they could send?
That’s such tough news for you to digest, poopscoop, really sorry to hear what you’re dealing with. You might find some support in how Nils has dealt with a terminal prognosis and invasive treatments: https://riderresilience.org/
His Instagram is more active than the website. He does a pretty good job of talking about how he deals with it, here’s a couple of quotes from a feature he’s got in the upcoming mag:
'If I wasn’t going to add days to my life I was determined to add life to the remainder of my days, regardless of the physical changes my treatment journey would impose upon me.'
'Spinning the legs improved both my mental and physical resilience allowing me to navigate the endless storm that ensued.'
All the best navigating this.
Anyone got a Therese Coffey poster they could send?
Hmm surely it’s not that bad yet.
Yep, it’s too much news to reflect on,especially with a massive stiffy.
It’s not over till the fat lady sings.
Its also possible to try the treatment and see how it effects you ie does the illness respond and how it makes you feel and then decide
**** this thing and kick its arse please 👊
Or at least give it a glansing blow.
Want to spend all your money on... hookers
If nothing else, he'd get his money's worth.
Joking aside,
I don't really do platitudes, because I don't know what to say - honestly, I don't think anyone really does - and because it's the last thing I'd want if roles were reversed. Please understand though that we're all hoping for the best for you.
You're looking at stats and as TiRed said, that may be skewed by demographic. But also consider, how many of those cases went undiagnosed until it was far too late? My mum suffered a stroke, gosh, 20 years ago maybe now. Whilst recovering in hospital they discovered that she was on the brink of double kidney failure. Today she's on a cocktail of pills but she's still with us, in a perverse but very real sense having a stroke saved her life. Maybe likewise here, your megapenis might actually have saved the day.
(Failing that, you could always have a stroke... )
Just googling (as you do) Acute CML and happened across this forum. You may already know about it, or not care, but just in case 🙂
https://cmlsupport.gn.apc.org/
@poopscoop Yes, I think mine was "regular" CML which is why the standard treatments work for me. I was also much younger than the typical case which made my odds much better.
As others have said, take some time to digest the information you got from the doctors and what your options are. Obviously your family and friends (and especially STW!) will want you around as long as possible, but you have to decide what that means versus quality of life and long term prospects. Ultimately there's no easy answer.
When I was first diagnosed I definitely went into a downward spiral mentally, assuming the worst (I was always cynical/pessimistic which didn't help). It's basically a grieving process, so if there's support groups and/or therapy available then definitely take advantage of them! You may be able to talk to some people already undergoing the same treatment to get a first hand viewpoint.
Really sorry that you're going through this and wish you all the best.
Really sorry to hear your news Poopers.
Thanks for the posts guys, I painted myself into a bit of a corner that night.
In other news FrankenDick/ RoboCock is going ahead probably next week but it won't be the pump actin shotgun type initially. It'll be a far simpler "malleable implant" one.
Basically, 2 rods instated into my todger which keep it permanently,erm, extended and I bend the old fella to point where I wish. Can have the more invasive pump action fitted at a later date if I wish.
So being malleable I'll be able to do:
Penile semaphore.
Pee in to the urinal to the left or right of me in pubs.
Set it at a jaunty angle.
Absolute never be able to enter a public bathing area again. 😁
Subtly let my oh know I'm not in the mood by making it into a U bend.
I was hoping you'd be able to have Pump It Up as a kind of entrance tune. Now what? Some Ram Jam?
Set it at a jaunty angle.
If ever there was a silver lining to a cloud...
So a couple of pipe cleaners down the 3rd eye? Just think of all the things you could make similar to balloon modelling
Set it at a jaunty angle.
😂
I painted myself into a bit of a corner that night
Hardly surprising given all the information which you suddenly were faced with and that you tried to process. Great to hear that there are plans for physical medical support, I truly hope that you are also provided with the emotional and psychological support which you undoubtedly also need. Good luck and best wishes Poops
Thanks, yeah, they are referring me to a cancer psychologist or something. I won't say no!
In other news...
Sister has now bailed on me, well my mum really. She's been looking after my old mum since I've been in. She called me, had a go at me for 20 minutes along the lines of me expecting her to put her life on hold (well, till next Friday perhaps...) etc. Had to barter with her and she will stay with mum till Tuesday. My son must have known the way the wind was blowing as he had already made arrangements to move on with mum for a few days if she bailed. He works from home at the moment. He's a bloody star, already done so much without even being asked. Family, both great and otherwise, eh? She and her husband are retired and I thought I might get a bit mod help but better to know now than later.
My son came up to see me yesterday which was great. I also now don't have to hand wash my only pair of boxers and hang them out the window to dry! Small wins.😁
P.S. Anyone know of any online balloon bending courses?
You’re looking at stats and as TiRed said, that may be skewed by demographic.
This is very true, I'm currently the only patient my urology nurse practitioner's cohort who is still working! (I'm not yet 60).
Anyone got a Therese Coffey poster they could send?
IF it's really serious we could unleash the Beast of Widdecombe!!
Poop - are you in Southampton or do i have you mixed up with somebody else ?
(... it's just that I need a wheel building 😀 )
P.S. Anyone know of any online balloon bending courses?
^^ That might require a little not material than when I currently have to work with.😆
Scaredy- I could build you a wheel but I suspect you'd end up in hospital soon after riding it too.Lol
She called me, had a go at me for 20 minutes along the lines of me expecting her to put her life on hold
So you’re not the only massive dick in your family.
Oof. Saw the first two pages of this thread, haven't popped back in as I thought there was a limit to how many penis jokes I could take. And I'm not that funny or creative, so didn't post anything.
Was not expecting what followed. Really hope you are doing a OK as you can be. And your sister bailing sounds lovely 🙄
While the prognosis seems awful for aCML, the very brief reading I've done has mentioned that stem cell transplants work in some cases. I presume you're on the list for one now?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5909725/#:~:text=The%20prognosis%20of%20aCML%20patients,amounting%20to%20approximately%2011%20months.
Anyway, all the best, and hope you get to have plenty of fun with that implant!
(Failing that, you could always have a stroke… )
It’s a good thing I read that before I picked up my can of beer and took a swig…
<span style="font-size: 0.8rem;">A quick glance at one source shows that median age at diagnosis is reportedly 70-73</span>
Well, as it’s my 68th birthday in a couple of weeks time, that give me something to look forward to, and save up for - no coke, that leaves me more to spend on a better class of hooker…
Nothing to add over and above what's already been said.
But definitely take your time to work out what treatment options you do or don't want to pursue.
And I’m not that funny or creative, so didn’t post anything.
There's no need, he's got a hand on things now.
Another one who has come back for the knob jokes and didn't expect the sting in the tail.
Good luck with whatever treatment you decide to take, an absolutely bizarre way to find out though. As for your sister, you learn a lot about people in times of stress and hardship. At least you know early on and not finding out when you don't have time or energy to make alternative arrangements.
Why do i think your having some
Grafted in?
Remember Bullheart (or Petesgaff as he was originally known) who was given a prognosis of "six months" with a very rare, aggressive form of cancer - but who managed another ten years before it got him, in which time he very much lived life to the full
https://singletrackworld.com/forum/topic/rip-bullheart/
All the best @poopscoop, I wish I could offer something more than platitudes and knob gags. Although I think the news of cancer is hard enough to swallow, without the (semi rigid) knob gags...
(and no, I ain't posting any images of knob gags, though I'm sure they exist)
Hey @Poopscoop. It's been quiet here for a couple of days. Don't feel u need to check in or anything. Just wanted you to know you my mate had to visit A&E last night with a broken/dislocated finger and when he was feeling sorry for himself, I mentioned your 'downstairs' issue and I think it rather put things in perspective and he had a bit of a word with himself 😂
I'm sure now things have had a bit of time to sink in, it's tough going but we are all with you. Take care fella.
Was thinking the same - hope everything is going OK today.
Hello all.
Firstly, thank you so much @charliedontsurf and all at STW for the parcel! My son is now at my place look after my mother and I asked him to open it whilst on the phone to me. He commented, "that's a really nice thing for them to do", to which I replied, " been telling you for years, STW is much more than a bike forum and mag."
A truly lovely gesture guys.
RoboCock augmentation delayed till next week as my bloods still need a little work vid the chemo. I'm fine with that, im no hurry to have 2 plastic rods rammed up the old todger.
Now the big news.
Some results came back from the Royal Marsden. They used DNA sequencing, I believe, to see if the they could pin down if it actually is the "Philadelphia chromosome" that is faulty, though initial testing says it wasn't. That was bad news and meant I likely had aCML and would likely need a stem cell transplant if viable.
Well, the Marsden DID find that the Philadelphia chromosome is faulty after all. The actual error within it is not the usual type (hence the initial testing didn't find it) but none the less, it's that chromosome .👍
That changes a lot. It means I have a slightly unusual CML but I've not got "atypical" (aCML).
It now means that I should be able to be treated with a drug from a small stable designed to target this chromosome. Hell, its even possible that, one day, I might not even need the drugs. Not that I mind taking them.
The knock on effect is also that I shouldn't need a transplant.... So no worry over finding a way to keep my old mum out of a care home whilst I had the transplant and recovered. That's a huge weight off my shoulders.
There could be issues along the way I'm sure ( I have an echo scan on my heart tomorrow) and I'm almost scared to have a little hope now as that rug was pulled out from me a couple of times over the week but this might, might just be a manageable condition after all.
This experience has already changed me. I've never looked my own mortality in the face like this before and I would like to say I met it's stare bravely and unflinchingly but in most ways I did not.
Over my life I've attempted suicide a couple of times, I don't find life easy, I've always struggled with it and always will.
Now?
As Roy put it, "I want more life, f***r".
I've never valued just being alive as much as I do today, I've taken out for granted. Life is still going to be tough because my mind makes it that way but bloody hell, it does beat the alternative.
I'm sure there'll be more to post in this thread if only about the Cyborg Cock implant but I want to say again, thanks for all the humour, piss taking, support and everything really. You have no idea how much it has helped.
Great stuff. I had a very similar experience to yourself with the initial diagnosis being somewhat different to the final diagnosis with the benefit of biopsy/bloods/bone marrow.
Search for me and read my thread from 5 years ago and hopefully it'll help. Feel free to pm for a chat mate.