Linitus Plastica

Hi Pam

welcome to the group although I’m really sorry you’ve found yourself here. 

I’m Louise 47 from Liverpool, 2 kids aged 17 and 10, I was diagnosed in August last year and had 4 FLOT followed by total gastrectomy and 2 more FLOT, not the same type of stomach cancer but the treatment is the same.  The good news is that you’re on a curative pathway, so many are diagnosed too late especially younger people because they don’t expect it to be cancer, I consider myself very lucky my GP was cautious and sent me for an endoscopy after vague symptoms. 

good to hear diagnosis to treatment has been swift, it’s a rollercoaster isn’t it, I can’t say the chemo was easy but I got through it, some people have better experiences than others. My advice would be to drink plenty of water to flush it and keep hydrated and eat what you can when you can and use the 6 weeks after chemo to fatten up for your op. 

good luck for Monday, we’re all here to support you and answer any questions. Will be thinking of you. 

lou x

Hi Pam

As Lou said, sorry you find yourself here but many of us have followed the same or similar treatment path.

My name is Karen from Stratford-Upon-Avon, now aged 58 but was diagnosed at 57. I have 2 kids aged 31 and 24 who live close by.  

I too was diagnosed last August and started my first round of FLOT in September. I was one of the lucky ones as these first 4 rounds of chemo reduced my tumour and I got away with a partial gastrectomy which took place on 19 December. I followed up with 3 additional rounds of FLOT and returned to work on 1 August this year.

It will be a rollercoaster ride to be sure, possibly with a few set backs on the way but a necessary journey back to health. My new normal is different but not significantly so and over time, you learn to adapt your eating habits etc., 

Good luck for Monday. Look for the silver linings...even if that is a bit of a stretch on occasion...and use love and humour to see you through.  Let us know how you get on.

Karen

Thank you Karen. 

I have no problem with the humour. I'm a deeply sarcastic and black humoured person. I've had a small setback today which I'll address in my main post (I hope I'm doing this correctly) but I just wanted to respond personally too.

X

Thanks Lou,

It's so reassuring to see someone of a similar age a year on. Everyone I found my age or younger online with my diagnosis didn't make a year. It scared the be jesus out of me. Seeing stories like yours give me hope.

Love P x

So my little setback today was a call from oncologist. My genetic testing is back and I have a rare mutation. Which basically means FLOT might kill me. So I'll be on adjusted dosage, reducing I don'know which part. And my side effects are probably going to be worse than normal (what's normal? )

So a little deflating, but not insurmountable 

Much love

P

X

Sorry to hear that, at least they found out in time. I’ve heard of people having a fatal reaction to 5FU part of it. I had a reduced dose on my 4th cycle due to neuropathy and my 6th was cancelled after a reaction to the first part of the infusion, I decided to stop after that with my oncologists advice. 

Being told your side affects are going to be worse isn’t helpful is it? Like you say what is normal? It’s different for everyone and we all have different thresholds. Keep an open mind. One thing I’d get this weekend in preparation is difflam mouthwash (going forward it can be prescribed by GP, if you haven’t already fill a form out for free prescriptions) bioten toothpaste and a soft toothbrush. I didn’t get any ulcers but did get a sore mouth and this helped a lot. 

 Keep your team updated on side affects they’ll help you manage them.  if you’re  experiencing nausea get different meds, ondansetron worked for me and o could take it alongside domperidone (the standard one they issue). Take your steroids as early as you can in the day, they tend to mess with your sleep.  

good luck, keep us updated x

Thanks Lou, baby toothbrush (purple dinosaur ) the toothpaste, and mouthwash purchased. Picc line in. I'm ready to rock.

Now looking at picc line covers online, I don't do beige and the tubey stuff is rubbish. I've got the Macmillan wig/hat lady coming during my 1st treatment. Might sound superficial but I feel better when I look better!

Thanks again for your comments & support. I'll keep this post updated as I can.

Much love P x

Great stuff, I had a few covers but my arms got too skinny and they just rolled off

I bought 4 wigs in total, I liked it being winter because I could wear them with hats and it looked quite natural, but if I was to only buy one I’d buy one with a fringe and a cap that allows for different partings, that was the final one I bought and I took it on holiday it felt most natural as you couldn’t see the hairline. I had lots of great scarves off amazon and headbands were really good. I shaved my hair about a week after the second cycle, it was coming out quite w bit but it never went completely, when I had post op chemo I didn’t shave it and it only thinned mostly around the front I’ve now got a bleached pixie cut and I love it, can’t see me ever growing it long again, so every cloud as they say  

Good luck for tomorrow, hope it all goes smoothly, remember lots and lots of water xx

Hello!

4 rounds of FLOT complete and operation day looms in a week (27th). Chemo was way less onerous than I feared, they even had me reassuring nervous 1st timers by the end.

Yet another small set back, I may have an issue with my heart which might make surgery a bit more risky. 2 exercise tests and an echocardiogram later and everyone is as well prepared as they can be except me. Pre-OP assessment on Thursday. It's going ahead no matter what even though I was given the option to back out (no chance)

Making the most of food & gin until Tuesday. Have had old friends visit from London, a friend from Devon coming all the way for day tomorrow then my body is a temple.

Anyway, just wanted to say hello and keep linitus plastica up in the search criteria in the hope I will find someone else/help someone else with this oddity (I've yet to find anyone outside an upper GI surgeon who knows what it is)

Hope everyone is staying well.

Much love

P

X

Good luck with the op, you’ll be fine