October 30, 2016 at 10:58 pm #9714
Martin Sylt, 52, diagnosed with stage 4 cancer of the gall bladder last December having had PSC (Primary Sclerosing Cholangitis) for 7-8 years previously, a rare condition that affects the bile ducts. Just about to start FOLFOX having previously successfully completed a Gemcitabine/Cisplatin programme in July with reportedly significant shrinkage of the primary on both the 3 month and 6 month scans. Things couldn’t have been better but it would appear that the tumour had other ideas and the discomfort returned in August albeit very mild but more significant come October, now on max dose modified release Diclofenac and Cocodamol with good control, was on 2x200mg Oxycodone at my peak earlier this year but managed to wean myself off completely by August and no desire to go back there if I can avoid it.
Fitter and healthier than I have ever been with three trips to the gym each week, remaining positive (not keen on the alternative!!) and not sure which has benefitted me most so focussing on both over the next six months of treatment. Now looking at early retirement although finishing work will be one of the hardest things I have done since this whole process started. Happily married with two kids (about to turn 17 and 14, one of my proudest moments was when my 16 year old passed all his GCSE’s in August despite the last twelve months), told them both about what is happening this evening, never easy………
So, any words of advice or positive feedback from similar patients who’ve had FOLFOX?, tolerated the last chemo programme well, hoping this will be the same!! Also, can you exercise with a PICC line in??October 31, 2016 at 2:17 pm #9717
Welcome to AMMF’s Discussion Forum, Martin – and thanks for sharing your story with us all.
PSC is one of those known risk factors for biliary tract cancers, so really sorry to know you had that and it then led to gall bladder cancer. It’s tough that, despite a good response to the Gem/Cis, the disease has decided to show itself again, but we’ll be keeping everything crossed for you with the FOLFOX.
Pain is never good, but getting it under control with minimum side effects can be a juggling act. Sounds like your determination has paid off, though, and good to know that you are getting it well controlled with what you are now doing.
You sound very positive – and great that you are keeping yourself fit and active – having such a happy family life is a real positive too, isn’t it.
As far as exercising when you have your PICC line in, obviously, you wouldn’t want to knock or damage it, but probably best to have a word with your CNS or consultant on how much and what type of exercise would be OK.
Re feedback on FOLFOX, I think you might get more responses if you post this under the Introductions area. You can post again, or I can move your post for you if you like – just let me know.
TomOctober 31, 2016 at 5:12 pm #9723
Hi Martin – just come across this which might be of interest for you:October 31, 2016 at 7:42 pm #9725
Brilliant, thanks for the link – very useful. Yes, we knew that CC was a risk with PSC, Problem is that my consultant missed the symptoms for 6 months so diagnosis was too late; I started to feel constant discomfort around Feb/March ’15, it got serious in August/September when I started clock watching paracetamol and ibuprofen doses and stopped being able to sleep through the night, diagnosis was in December; bit of a crap year really….
Still, we are where we are and no matter when the diagnosis was made, I would have still had cholangiocarcinoma and we all know that, whilst cancer is never a disease you would choose to have, CC is one of the more extreme examples along with pancreatic (which is probably a level up on CC, there’s always someone in worse position!)
MartinOctober 31, 2016 at 8:41 pm #9726
Glad if that link is of use, Martin.
Yes, unfortunately, late diagnosis is often the case with cholangio, and especially with PSC masking things, too. Apparently it’s really tricky to spot amongst the distortions of the ducts that PSC causes and currently there’s no reliable biomarker for it either, so tough in that direction, too.
Spotted you’ve posted under Introductions now – so let’s hope you get some comments re FOLFOX there.
Have you been on our Facebook page? That’s pretty active and you’ll get to know lots of names of our CC family that way, too …
TomMay 17, 2017 at 9:06 am #10615
Firstly, my condition has recently been clarified as gall bladder cancer, not CC but this changes neither the prognosis or treatment options and have also developed a small bone lesion in my neck, doesn’t seem to present any major issues at this point, on calcium supplements and monthly Denusomab injections to maintain bone strength. Finished the FOLFOX treatment a month odd ago, Oxaliplatin dosage reduced to 70% for last two treatments because of peripheral neuropathy development. Did it work, depends on the definition of work; lung tumour grew from 0.5cm to 1cm (big deal??) and the liver tumour from 4.5cm to 10cm so the medical assessment was mild disease progression which I can live with (not a pun!!)
Neuropathy which isn’t a major problem, more of an irritation but it’s effecting my balance (or ability to balance), hadn’t realised it was DVLA reportable………..
Blocked and bloody sinuses which have now cleared, thankfully! Can recommend Xylometazoline based inhalers (Otravine) to manage symptoms, works quickly, for hours and reallly well.
Generally feel weak, certainly nothing like the strength I had in my legs 3 months ago. Returning to the gym at the end of the week but I think it will be slow.
Get out of breath easily heart being checked to rule out any heart conditions (not convinced this is the issue)
Stomach and bowels were off during treatment
Thinning hair and cuts struggled to heal
Prolonged period of jaundice without me feeling ill, this can be a known side effect of the treatment and, because I don’t feel unwell, not majorly worried.
What next? Unsure. Possibly going to get 3-4 months off before the next treatment and possibility of being no referred to the Royal Marsden for trial programme participation has been raised, possibility of reverting back to gemcitabine treatment without the cisplatin element (neuropathy issues) has also been suggested.May 17, 2017 at 10:37 am #10617
Thanks for coming back with your update, Martin. And really helpful and useful for others that you have listed your side effects …
Keep us posted on your ‘where to next’ – also keep an eye on AMMF’s clinical trials page, as we try to keep this updated with all the trials we are aware of that are currently recruiting in the UK, so something of interest to you might appear there. http://ammf.org.uk/clinical-trials/
And if you get referred to the Royal Marsden to be considered for one of their trials, do keep us informed and let us know what trial you might be going for.
All of us at AMMF send our best wishes for your continued wellbeing, and no doubt others will be coming in here soon to add their comments for you.
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