Hi Rosemary

He's moaning at the moment having eaten too much(: but hey, this time 5 months ago he struggled to get anything down. ‍♀️

He was given something called FLOT, see if can remember flurocil, leucocyle (???), oxyplaitin and taxol.

I think, although I might be wrong, that you have to be in pretty good nick to have that one apparently as it is nuclear ️. No idea what EOX is, but quite a few on here have had it or mention it for gut system stuff. FLOT messed up his platelets and white cells, but nothing that couldn't be managed and treated. The stuff in FLOT are not new drugs, but the combo all together in one go is about 2 yr old. I felt 'our' MDT team were really on the money as far as up to date treatments go.

We go tomorrow to see the team to see if he needs anymore FLOT now that he is post op. They said they got the bu''ger , with good margins etc, BUT, refer to this post op chemo as belt and braces, I think they 'like' to do it as cancer cells are very clever at hiding and moving around to set up home elsewhere!!, so we are expecting it. Even if he has just 2 cycles, that will be good.

Anyhows. I totally know where you are coming from in terms of the emotional impact. My oh my- it is mind blowing. I love it when people say 'how are you coping', I mean what on earth does 'coping' look like, another old chestnut seems to be 'stay strong' again what on earth does that look and feel like!!.

There is a poster on the other threat Daisy 71 I think who posted about what NOT to say to cancer patients and it genuinely made me laugh out loud. 
We have young children, we made a choice very early on NOT to tell people the extent of what was going on,(family know) not because we were 'embarrassed' or whatever, but because we didn't want anybody's pity or sympathy. We just wanted to keep things as normal as possible, which we have managed. The general 'story' is "daddy has ulcers that need shrinking , then removing", which of course is the truth, minus one word. We certainly didn't want his relationship with the kids to be shadowed by that word. Most kids of their age think cancer is always fatal (social media etc) , when actually it is not and quite often is more like a chronic disease that needs to be managed.

Anyway- I can't half blather on (:

Take care

Good to hear from you Hilts, glad you are keeping your cheerful humorous nature, I think what you told your children sounds like a good idea. I hate the stay strong advice, I am strong when I can be, but I allow myself not to be if thats what I feel too. This week is a good week for us as hubby is between chemo cycles and has got some energy, and appetite, it has been a joy just to share a shepherds pie together and see him eat and smile! 
 

Next week, the chemo will possibly floor him again, but we know now that it will pass, and we just enjoy these good days while we can. 
 

My thoughts are with everyone here, daily. 

Thinking of you Rosemary, good luck for your dad's treatment x

Hi Daisy, 

I'm always 'lurking'somewhere on here.

i totally get why you enjoyed the Shepard's pie!! I cannot belive that this time last year, Shepard pie would have been a cr*ap leftover tea , for Monday night or something- now we in this house 'worship ' it . 

When all this started I remember sitting at the dinner table 'praying' that he wouldn't cough/gag on what we were having, the relief after the 2 nd chemo when all the symptoms went was immense, progressed from cottage pie, back onto steak n chips type stuff.

Because he is post op, we are back on the Shepard's pie type stuff again for a while until everything heals and settles, brown sauce makes it extra 'special' .

As for keeping the sense of humour going , well what else can you do eh.Don't get me wrong, I have had some spectacular'moments', but even he has kept up the humour. We are like that anyway, laughing at the most inappropriate stuff ! 
I thought from the very beginning, that of course we'd rather not be doing this at all, at least he was diagnosed with cancer!!!! it could have been far far worse, like some hideous disease with no treatment , of which there are many. How nuts is that.

staying strong and coping arrrrggg. I hate them, as far as I am concerned they mean nothing, hot air, we are humans with the whole tapestry of human emotion, those two word imply that we shouldn't show it, or at least keep it under wraps, NO, much better to let it come and go as needed.

All we can all do is keep chugging along
 

Hi Rosemary,

I'm very sorry to hear about your dad's diagnosis. If you can access my page/threads/ updates i would like to think they would offer you some positive thoughts. My father was diagnosed just over 2 years ago with Stage 4, T4 N2 M1 of the distal 3rd of his esophagus (9cm tumour which had spread to lymph nodes around the area and to distal lymph nodes in his stomach). My dad's diagnosis was obviously terminal with no obvious cure but with treatment options to extend his life. Everyone's journey is different but some information/ insight into someone else's may offer some reassurance. 

My father has had immunotherapy, with good results. 

Advice - Always gain 2nd opinions.

Are the consultants investigating what your dad's HER status is?

Feel free to ask any questions.

Take care,

Ward.

Thanks Daisy, best wishes with your husbands treatment too, hope it continues to progress well xx

Hi Ward, 

Thanks so much for reaching out. I definitely appreciate the advice from others who have have already been on a similar path to what we are about to take. Sorry to hear that your father has already been on this difficult journey. 

My Dads oesophageal cancer is of the squamous carcinoma type and I am quickly finding out that the majority of cases tend to be of the adenocarcinoma and usually around the gastroesopheal junction. 
 

We are seeking a second opinion and also looking into immunotherapy and also investigating different types of radiotherapy especially because of the pressure the second tumour in the lymph nodes puts on my Dads neck. 

I believe HER2 drives cancer for the adeno type. We asked our Dads oncologist if they would check the biopsies to see which proteins they are over expressing mainly PD-L1 to guide immunotherapy but unfortunately the consultant informed us they are not funded to carry out such tests. 
 

Thanks again for the advice-I will look through the past posts you mention! 

Hi , 

Don't get me started on home schooling aaarrrgg. Frankly they are having a laugh if they think I am going to be sitting for 7 hours trying to teach.  My sister in law works in a nursing home and has been going since day 1. I'll probably get slapped for saying this, but why do teachers think they are so special, when nursing, drs, ambulance , bin men etc etc have been working face to face since the start , not to mention the delivery drivers who fetch everything to them !!!! Working from home hahah what luxury,on full pay too most of the rest us mere mortals have to crack on!!!

No, I must stop.......

you are right that many of us on here are adeno's. I've never 'tuned into'squamous posts, but I suspect there are many on here. Use the search box.

If you don't find any- stay on here- we are all at some point in this surreal experience.

We went to hospital yesterday and were told he is disease free! Yay, but - there always is one! That is visible disease, stuff they can see on pathology and PET scanning. They cannot see in anyone microscopic bu**ers that are off planning to set up home elsewhere! So just to be extra sure they are going to nuke him with 4 more cycles of FLOT.  We should be ecstatic, and probably will be once we have processed it, but really not looking forward to the chemo.

Anyhows onward we go

Thanks.

Just to let you know my Father has both, Adeno & Squamous - Rare, yes.

Ward.