Dad's oesophageal cancer diagnosis

Hi

sorry to hear your dads diagnosis ! I have a tumor that is blocking my oesophagus and I br ing up a lot of foam but it’s the saliva that I swallow that has nowhere to go (expect back up)  

hope this helps 

Tricia 

Hi KXmas

i finished chemotherapy and radiotherapy 3 months ago I had a blood transfusion half way through my treatment after the blood transfusion I instantly felt a lot better.  I was told my oesophageal cancer was treatable but not curable . I get white phlegm a lot but I was told it could be from the acid reflux.  I am waiting for a endoscope because my last scan was showing my tumour had not shrunk a lot so I might need more treatment.

jayne

Hi Tricia,

Thank you for coming back to me. Hope you are ok too. 

Kelly 

Hi Jayne,

That's really helpful thank you. Hope you get some good news. 

Kelly 

hi kelly found the foamy party the worst thing, always used to carry around amazon blue sick bags, discreet and holds more foam than a normal bag.  now almost all food via my j peg, and it feels chemo and radiotherapy have made the oesophagus feel different, t2 0n0m, as managed luke warm tea and gluten free bisuits dunked.

i would have to make myself sick when trying to eat some sort of normal as food felt stuck half way, hence the camera and cancer diagnosis, i used to bring up bags of white foam, and was on 30mg x 2 lanzaprole a day, sitting with a v shape pillow helped, but the specialist nurses on your team will give more advice as will all the honest, caring supportive family on here.  no question is too small, silly or irrelevant, i have learnt so much, when i had breast cancer last october, you couldnt get enough help, support information, this little sh~te of a cancer is a whole different animal, but i heard the word cure, what ever that entails and what ever time it gives.

luv jules

Hi jules

This foam regurgitation is really getting me down now that and the fact that I’m on a waiting list for chemo and still not heard anything ! How are you getting on with the JPEG do you get a taste in your mouth from the food ? 
Hope your feeling better this week good to hear you can eat something just a cup of tea would be lovely 

take care stay strong 

Tricia 

Hi

I'm sorry to hear about your dad's diagnosis. I have cT4 N2 M1, diagnosed in September last year. I had chemo- and immunotherapy between November '23 and April this year, since when I've had immunotherapy once a month.

Over the last few months, I've increasingly produced a lot of saliva, usually only around mealtimes and it's difficult to eat anything without bringing it up or having to bring up chewed food as I can't swallow it. I do try and eat slowly and have pauses so that I don't get 'blockages' but that doesn't always work, which then means I have to regurgitate food. As you can imagine, it's a most unpleasant way of eating. Sometimes I produce just a few 'spits' of foamy saliva and sometimes it's up to 500ml of foamy saliva, chewed food and regurgitated food. 

The most frustrating thing about it is that there doesn't seem to be any rhyme or reason behind it. It doesn't appear to be food related. I have a Buprenorphine patch and I take 4 * 2 * 500 mg paracetamol each day plus Oramorph for any breakout pain, along with Lansoprazole once a day - the timing of taking these also doesn't seem to have any impact on  the amount of fluid I produce. 

I'm sorry that I can't be more helpful. I came across your message as I was looking for help myself. I can only say - as you can see from the other replies here - that it's not an unusual experience and I do wish everyone who is suffering from it can find some kind of relief. 

All the best

Matt

Hello Matt, what impact on the tumour has your treatment had and where in your oesophagus is/was the tumour site? Have you had any periods of 'normal' eating since your initial diagnosis? 

My husband was getting increasing mucous production and having to regurgitate until the treatment kicked in. He has been very lucky so far in that it seemed to work almost straight away. He is on FOLFOX chemo and Nivolumab immunotherapy, fortnightly, 5 cycles in. 

I was interested to read that you continue to have monthly immunotherapy. We wondered what happens after chemo stops. We were told the initial treatment plan is for 6 cycles, but could be up to 12. 

Sending best wishes to everyone in your struggles against this horrible affliction. 

Lorraine x

thanks tricia, the places i have had to be sick, there is no shame, stopping it, or dignity, fought against the jpeg, for a while, selfish really, i have back pain and we have a hot tub so didnt want to give that up! how ive now changed!, if i had done it sooner i probably wouldnt be under 7 stone, but now increasing the food pump day and night under the dietician, just finding it easier to run at night when i am tucked up on the sofa, especially if its been the early starts for radiotherapy, being knackered takes over, only just started this but it is a necessity, dont want to be admitted to put weight on!!

so weird to explain, when the dietician and i agreed to go totally via the jpeg, and the lovely food pump, swallowing, being sick and foam was getting too much, so not sure if it was coincidence that nothing much was really going over the oesophagus  and into the stomach, so not causing the acid/foam reaction.  havent had to take the anti acid tablets i was on, will check with nurses and oncologist wednesday if this is still right, , the warm tea was probably 2 tablespoons, but felt human briefly, again taking it very very slow as the first soggy biscuit came straight up.

think as the jpeg is attached to the small bowel, doesnt go down the oesophogus into the stomach, so no food taste as its literally a litre of thin vanilla flavoured liquid going in a 100ml an hour, hence 10 hours, 1500 calories  on a small frame that can be moved around, (do have a lovely rucksack but not tried that as an option)  the massive god send is between the speciliast nurse and my gp, finally all the meds go via a syringe into the tube so no more retching when trying to take some of the old horse tablet size pills. 

its a million percent true when our lovely family say, what ever peg you have, will be and is your life line. i was probably doing 500 calories max on the soups and shakes before and that was a good day!.

i am on last week of 5 chemo and 25 radiotherapy sessions, with delayed chemo today down to rubbish bloods, devastated, but if the body cant take it, they wont let it happen, so the plan as i understand it, is if still fit and heavy enough to go down the op route of removing the oesophagus and reconstruct with stomach. at some point during/after the 5wk recovery period, i believe there will be another ct pet can to compare like for like,   last 2 encologist meetings to discuss options was so overwhelming, dont remember much, apart from crying, apologising, and wondering who the hell were all these people in such a small room with us.  so getting my list ready to make sure i know as much as i should this wedneday.

nurse did say we produce a litre of saliva, and wasnt too concerned about the wall paper paste effect, and the full foam bag, seems a totally normal reaction, although so annoying and yuk to say the least, hence the amazon bags were a god send, friend uses them for her car sick boy.

there is no book for this little orrible bugger that decided to say hello, and they say the treatment is brutal but recovery is worse, but recovery is recovery, and this is a massive journey, but this forum is the blanket, support, hug, vent , cry and laugh, that we all need, doesnt seem to need a day off this little git, unlike the days when we literally do.

keep posting,  and sending you hugs, just on a side note, i have woken up dreaming that i ate 3 pitzas, actually felt so full and the smile on my face!!.  didnt last when i realised it was a dream

A lot of my foam days were back in late summer, when i was hanging on to trying to eat some sort of normal, we did a few american/classic car shows, so learnt how to style the blue bag in the boot out, most embarassing, was at car show having a bbq with friends, love beetroot but foam party didnt, went to rear of the car pretending to be checking something while saying hello to the beetroot immediately.  5 mintes later friends were in a big panic, their lovel grey and white new chihihua pup had done one, 2 minutes later up he pops, looking like he had just enjoyed road kill!!, red mouth and snout, everyone is freaking out, hubs looked at me and said thats your flippin beetroot hes gobbled up!!, so there are some smiley days x havent fessed up to this date

take care, sorry for the essay!!

jules x

Great story you’ve got to laugh !!  Just pluged my pump in until 7 In the morning I have just been lowered to 1250 cals as I was overweight before this little problem !, food goes into the duodenum so can’t understand why I get a taste ?? 

keep your chin up sending hugs by the way where do you have your treatment .? 

thanks Tricia