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Andy
Thoughts and prayers are with you. If I can help drop me a PM.
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This is essentially the treatment everyone's hoping I get accepted for SOMEWHERE anyway.
https://eandt.theiet.org/content/articles/2018/03/chemo-free-cancer-vaccine-moves-to-human-trials/
In its infancy but basically the only chance I've got
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Cheers Bullheart. Coffee would be great at some point. Long overdue I think!
Re: donations - don't be silly! If anything I'll be chucking some your way if I can.Macmillan have invoked legislation usually reserved for terminal patients, to fast track all outstanding benefits for the last 3 months and which should actually enhance those benefits. It should also get me the maximum enhanced PIP allowance for the rest of the year too.
They said they were doing it without hesitation even for the cases just deemed difficult at the moment in an effort to fight back against the powers the likes of Atos have been given.Not to say I'm terminal anyway.... everyone is in one way or another 😆 but I just happen to need this trial to stay alive.
Anyway, sun's out, legs are shaved, coffees beckon. Think I'm off on the bike for a bit.
Fuck cancer.
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Good attitude
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Started chemo this morning. Fucking CHRIST I know how to have fun don't I?!
Bit of an improvement from last Thursday where I thought I'd been told nothing much was going to be possible. My consultant and I both assumed I was well in to stage 4a or 4b....
My PET scan on Wednesday from head to thigh came back with very clear results showing that there were "only" 3 tumours - 1 cluster on the left of my neck, one small one on the right and another very small one near the back. So, I'm not stage 4 but stage 2a, being one localised area with minimal spread.
Essentially it hasn't really metastasized but I had a CT scan yesterday afternoon for a black and white high def comparison and they're checking them over side by side today.The good or bad thing about "it" being localised and much more manageable & easier is that they're insisting it's going to be chemo for 2 weeks followed shortly by 8 weeks of radiotherapy in 5 day groups and 2 day's recovery. The chemo has to work well for the radiotherapy to do the best job, then I have to manage to get through the radiation doses...
Once I've got through all of that I'll be getting a few weeks recovery, then as soon as I'm well enough again I'll be hopefully going on for a week of ULTRA high dose chemo again followed straight up with my 2nd stem cell transplant.
Assuming all of that goes to plan, I have to then get on to a very specific and highly experimental ground breaking new cancer vaccine trial which will push my (new) immune system to its limit while they train it to produce a very strong immune response to lymphoma cells...
It won't be easy to get on it, and it won't be easy to get to the stage where I'll be able to do it, but if I get through all of these stages there's a chance I'll never get this again.
To all the people who have managed to donate something to me, I've treated myself to a few things to help.
For the good days- new cycling mitts, bottles and a cap and potentially time to get some new padded shorts for pootling about.
For the bad days- a new PC game, a Netflix subscription, and some great noise cancelling headphones (only Sennheiser CX2.0G's but they're great for the money) to drown out the world and the ward.Good thing, or again bad, about this initial treatment is it's just today and monday (different drug Monday though) then 2.5 weeks off. Plenty of time to rest, but plenty of time for the symptoms to escalate. Fear not though, I haz weed and a vaporizer. Thanks anonymous donor 😉 it should have any aches and pains, but it probably won't help with the long term change of taste and smell.
Never know, I might even get to enjoy a bit of summer at this rate but fucking hell it's looking like as much of a challenge as both previous times running in parallel.
3/4 of the initial chemo left
40 moderately high radio doses and the terrifying potential side-effects including permanent beard and tooth loss.
1 week of ULTRA high and a stem cell transplant from my sister....Then who knows.
Got to get a near-perfect score on each of these bastard stages to have a decent long term hope.One really important thing I've been told recently is that radio has an extremely high rate of successfully stopping ANY recurrence of cancer at the site it's treated. Just going to have to keep that at the front of my mind. Going to be one bitch of a ride
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Any updates? Hoping no news is good news.
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Right-o update time I guess.
Sorry sounds extra ominous... it's more because I'm writing this ad-lib and realise it's been a few months in which time a HUGE amount's happened.
Firstly, I'd wanted nothing more than to post a fortnightly update on the fundraising page so nobody would be left wondering about events, treatment, progress etc.. however it dawned on me at the end of April that I just had to assume the worst about how low the DWP et al might stoop to dismiss my benefits claims and investigate me for whatever reason they could find.
So, yeah, I had to go almost completely silent online. Only updating people on instagram with riding photos, hospital photos etc. I've had to change my Strava profile name for whatever good it might have done (it definitely confused a few people).
Not really sure which order to describe what I've had done to me, what I've got up to, how I've felt for the last 3 months, so it'll probably come out massively disordered but here goes.
As of the last post and a fair bit down to all the supporters who came out of the woodwork, I set myself a daft challenge - other than the week I had surgery, I rode all the way through chemo and subsequently all through Radiotherapy (try as I might, the effects of it fought back and have just caught up to me in the last few days).
I knew I only had until about now (when the radio fatigue and throat pain/dryness floored me) to get my fitness as good as physically possible pre-stem cell transplant. I aimed for 3,000km and have somehow cranked it up to 5,030 in exactly 3 months. I actually managed to average 97bpm riding back from radiotherapy yesterday and realised I'd finally made it, done all I can, all I need to do.
Feeling very good about how I'll likely deal with the transplant now. The week of ultra chemo is savage, strains the heart, lungs, brain, digestive system, mind... the works. If I'm still physically where I am now, then I should be good.Anyway, a large part of the silly distance was to show everyone who's supported me that I wasn't lying down and taking this. I actually celebrated the end of chemo with an 800km week just to show "it" who's boss ;) The donation money has bought a LOT of essential coffees and gels, not to mention the brand new pair of 4000's I've just had to replace again. I basically wouldn't have been able to get myself in shape without the money for food and bike maintenance.
So... what next.. DWP still trying to fuck me over, financially I'm just about juggling it ok. Housework, given up on for now - it just doesn't happen. Cycling as of today - paused other than riding to and from hospital..
My sister's going to be my cell donor, so on top of going through a horrible break-up, is on a horribly strict healthy diet for the next 3 weeks while I'm sure all she wants in donuts and gin. ..
What else?...Radiotherapy side-effects! Oh joy... 1st day, being fixed to a table by my face I had a full-blown panic attack. After that it was ok I guess. A very mild tingle during the 4 minutes of irradiation.. which went on in to the 2nd week. Happy days, I thought.. I'm one of the lucky ones who breezes through it.
WRONG
Thursday/Friday last week my energy levels suddenly dived to the point I was actually in pain all over. Then the dry mouth kicked in (high chance of losing my saliva glands and thyroid to this dosage). Imagine the feeling in your mouth/throat after the longest heaviest smoky boozy night out you've ever had - THAT, all day, all night. Nothing fixes it.
Also, as of this evening my sense of taste is on leave. I can only taste sweet things, and can't detect salt at all.Think that's all the grim news I've got for now, but I can finish with a bit of good news at least. I'm off to a spa town on the Bay of Arcachon near Bordeaux with my ex in 3 weeks for camping, seafood and walks in the pine forest. Not sure how I'm going to cope with the journey or cost, but as my possible last ever holiday I'm going to make the most of every minute!
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Jeez, as I sit here, 27 months into a 36 month prostate cancer treatment program (chemo-, radio-, hormone-therapy), I'm dumbstruck by what you're doing physically. During the tougher phases of treatment, I did try a few rides over 1hr but felt like it was really straining my immune system, and that's what I needed to strengthen in order to support all the medical stuff. I kinda surrendered to the treatment and the impact it was having.
Latest blood test looks extremely positive and I'm up to weekly rides of up to 3hrs now. Early on, I did have a fantasy of doing what you're doing, but kinda shifted from "fuck cancer" to "what's this cancer teaching me?" which sounds totally lame as I write it, and seems to have helped.
Anyhow, looks like you've got your warrior on, and frickin good luck to you. Hope the stress levels subside a bit - deffo not what's needed while going through all of this.
Subbed. Cheers. Ben.
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Obsession with Strava and mileage...check.
Glad to know you're feeling yourself mate ;)
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About
Lymphoma Hat-trick. RIP Rowhan
Posted by
@Rowhan
Well, I had my Oncology/ENT meeting yesterday.
Same type of lymphoma found in both tonsils, not just the left one as had been anticipated. 3rd time around seems to be dramatically more complicated to treat long term. Dramatic enough that if I don't make it on to a new type of trial drug program that I've essentially got about 6 months left.
Yup, 6 months.
Having a PET scan either Monday or Tuesday so they can workout how many tumours there are other than the few we've already discovered lower down the left side of my neck. Hopefully it's only stage 3 at the moment, but could well be stage 4 already given that I've had some mild pain in my liver and small intestine in the last week.
The treatments I had first and second time around will be tested on cell samples to see if there's any reaction this time, then I'll likely be straight in to St.Georges for a few strong and narrowly spaced rounds of chemo to reduce if not get rid of the tumours I already have.
If that doesn't make any serious inrodes in the disease and extent the time I can wait for a trial place to open up for me, they've said there really won't be much hope unless I get accepted for the same sort of trial in France or Germany.
Failing that, the last hope would be a trip to the US but the treatment would be likely to cost in excess of £100,000 maybe way way more.
The reason I've been given for the outlook being so bad is that it's the fact that it's back at all, a third time, after a successful stemcell transplant. The odds of it coming back were very low i.e. 2-3% per year at this point but it having come back now poses new challenges because we're out of conventional drug combos that are going to have more than a temporary effect.
We can completely eradicate every cell with the same drugs as last time and i'm almost guaranteed to have a recurrence within 6 months, which is why they've said my only real hope is the new Cancer "vaccine" which will train my body to have a strong immune response to Lymphoma cells in the future.