Hi Rayb

just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

do you know what a plo is in an operation? 

would be grateful if you have any idea

sorry to hear about your diagnosis x

Cheers Lee,

I hope that your dad is continuing with his treatment which sounds very encouraging.

keeping the faith (for everyone)

Milly

Hi Milly 

not been on here much recently but did notice your comment about the dumping , yes to much sugar is a definite cause as i have learned also , anyway hope you are all getting on with recovery and take care of yourselves

Regards

Douglas

Hi Douglas,

Thanks for that and I wondered how yiu found the complimentary therapy that yiu mentioned in a previous post?

keeping the faith

Milly

Hi Milly

I am waiting on a course of reflexology provided via  a local charity and a general fitness course from my local authority , hopefully in the next few weeks and i will let you know the outcomes , take it easy.

Regards 

Douglas

Hi Everyone.

after 1cycle my only real problem is acid reflux between 12 noon and 5pm every day. I think I am doing the right things like eating slowly and softer food for lunch, + fortisip, and I also have the fortisip and Ames savoury soup to add to normal food. As backup I have a prescribed Peptac liquid which is equivalent to Gaviscon and which coats the stomach lining. My main "defence" is Omeprazole from my GP and the dosage is 2 once in the morning.  I am posting this to give my experience of omeprazole together with peptac.
The issue is this. The omeprazole is not sufficient. My GP says don't take 3 per day but use the Peptac instead of a third omeprazole. Peptic instructions say clearly not to take other medication including the anti-emetics within 2 hours of peptac because it inhibits absorption of the other medication. Any schedule changes I make would not quite fit in stop the pm acid reflux. This will be surmountable so any bright ideas ?

walter Mac

Hi Walter-Mc 

Welcome and glad you found us! I'm afraid I don't know what to suggest but others on here may do and if not I would suggest that you speak to your cancer or GI nurse specialist as they are fountains of knowledge!

keeping the faith

Milly

Hi Millie

as always I contacted my upper IG before anyone. Their suggestion was one in an then one in early evening which didn't work, then they were unsure so suggested taking 3 a day. That won't work because the prescription was not from the hospital but came from the GP who said unequivocally don't take three. So that is why today I asked for anyone on the forum. for good ideas. 

keeping the faith, the only way is up !

Hi y'all.

welcome Walter mac. To the oesophageal club. Hope you find it as useful as most of us do

In fact I have just been for a long weekend in the big smoke, and where is the first place I come when back? Here.

We (husband = victim, me = watcher and resident chatterbox) are out the other side - for now, I always say that, feel like I'm 'jinxing ' if I don't. After 9 months of treatment he is (for now) active/ visable disease free. A year ago last week, we got the shock, sudden diagnosis at the age of 56. Started treatment on 5th September finished on 23 rd March. What a 'spectacular' year it has been. We still look at each other and think what the heck just happened.

Most on here are pretty fit people, the diagnosis coming completely out of the blue, bit of sudden food clogging and bob's yr uncle adeno.

I can probably come in on your 'omeprazole' issues. We are generally NOT a good example to follow, as we do 'tinker', but given the diagnosis, we thought 'well, the worst is happening, so let's just try things.

Husband started before diagnosis on 20mgs, of course it did nothing, it was only once the 2 nd chemo was given did his food clogging improve, but of course with the blockage in decline, the GERD increased. He would take his omeprazole in the morning and quaff a load of graviton of an evening. Since surgery and post op chemo, he still has the reflux, but he now takes 80mgs of omeprazole, 40 in the morning and 40 in the evening. Recently, he has not needed the gaviscon. Also what does sometimes 'escape' is not acidic. So doing it job. Omeprazole does take time to work, about 3 weeks I would say.
Millie- yep the 2nd round/ post op chemo is pretty grim, but of course it will be doing its job. So now 'only' 2 more to go FOUR WEEKS. Then the recovery , both physically and more difficult emotionally,really begins.

One thing for us- anyone have info tips?
Husband eats pretty well, BUT, he can't seem to hold on to much weight. His big losses came during the post op chemo. He muscle loss is quite noticeable, his butt has vanished , legs like sticks, he didn't have much to play with before!. Eats loads of protein, fat etc, but nah, still skinny.

Any tips?
Anyhows laters folks

and keep keeping the faith

Hilts x

Gosh - I posted the following in the wrong chat:

Hello to fellow rollercoaster riders,

I’m still chugging along – but more of me later!

JaeInKent – hope you are coming out of the feeling like youknowwhat for the first week after chemo.  Glad that you are not on the new-age food anymore – it feels like a bit of a free pass for me at the moment, eating what I want, and the missus keeps threatening to remove it and get me eating “sensibly” again as my weight is relatively stable.

leechap – great news on the shrinkage.  Loss of appetite is a big problem – certainly in the months post op it almost seemed to be the teams biggest concern that I didn’t lose too much weight as it leads to other problems on vitamin and mineral deficiencies. Even now, I enjoy eating mostly and have gotten into a routine for eating – but if I don’t eat, I don’t miss it (I don’t get the rampaging hunger that I used to get). I too was given a sample pack of the Aymes – with a view to getting them on prescription.  A couple of them were palatable for me (vanilla being 1 and chocolate being the other), but the rest……..  Fortunately, I ate food so didn’t need them.

Milly – what are you trying to do to us?  Hope your ankle is improving!  I bet that big boot is fun – gosh, I wonder if they do a boot for me if anything happened to my ankle – best not find out. Delighted to hear about hubby too – I was the same on the 2nd round of chemo, right of food for a few days and then picked up afterwards ready for the next bout.  The dumping syndrome is odd – I found when I understood the dynamics of why it happens quite interesting

“Early dumping syndrome can occur because of the dense mass of food that gets dumped into your small intestine at an earlier stage of digestion. The intestines sense that this food mass is too concentrated and release gut hormones. Your body reacts by shifting fluid circulating in your bloodstream to the inside of your intestine. As a result, your intestines become fuller and bloated. Diarrhoea often occurs 30 to 60 minutes later. In addition, certain substances are released by your intestine that affect heart rate and often blood pressure, causing many of the symptoms of early dumping. This can lead to lightheadedness or even fainting.

Symptoms of late dumping happen because of a decrease in blood sugar level (reactive hypoglycemia). Reactive hypoglycemia is low blood sugar caused 1 to 3 hours after a large surge of insulin. You are more likely to have dumping syndrome if you eat a meal heavy in starches or sugars. The sugars can be either fructose or table sugar (sucrose). Insulin levels can increase to high levels, and then lower your blood sugar too much.”

I tend to get “late” syndrome, but not all the time.  I had chocolate cake (that was almost pure chocolate) at a restaurant on Saturday without any problems and again for 11’s this morning.  Last weekend I had a problem after a beer and a few crisps, so go figure.  It has certainly eased off since the early days post-op.  I have mixed fruit muesli for breakfast every day – and have yet to have a problem post that.  If I get it, it’s usually either mid-afternoon or late evening.  And sometimes, I can just rest when I get the palpitations and sweats, and it just eases off.

And congrats on the anniversary! 

My news is that my partner and I got hitched last October after 33 ½ years together and have only just told our friends (hence a party on Saturday).

Tabnabs – great news on the progress and congrats to your son – 1st class! 

Hilts – holidays in the Sun, weekend in the big smoke!  What’s it like? I don't know what to suggest for your hubby.  I've settled around 118kg, and have also lost a lot of muscle definition - certainly the legs are skiinnier (born out by the skinny fit jeans I've just bought).  I've started working out again, but its slow progress.  I will hopefully be building up the stamina over the coming weeks and will get advise from the missus on how things are looking.

Walter-Mc – it’s interesting that your reflux tends to happen 12 – 5.  How does it tie in with the eating?  Do you eat differently for breakfast/lunch/dinner?  Trying to find a pattern to what works and doesn’t is a challenge and google can come up with multiple answers – go for a walk after eating to let gravity do it’s thing and have a lie down after eating to slow down the movement of food through the stomach (mind you this is post-op).  I guess it’s a case of working out any patterns and trying different things both food wise and movement wise to see what works for you.

Apart from that – I am now 5 ½ months post op and 2 months post final cycle of chemo.  All good – I still have not managed 4 pts yet.

Cheers all. 

bfg

Hi Hills x 

tips for putting on the calories if using the Aymes actasolve savoury powder soup and Fortijuice drinks prescribed under NHS.

I think these tips may be out there already but.....

Aymes says add something like 200ml boiling water. The soup is both very thick and powdery and not at all tasty. So what I do is use a 500ml cup and add the portion of Aymes plus a much more tasty packet powder soup from our supermarket. (Not allowed to advertise names) Mix the two powders together then fill the 500ml cup up to the top with boiling water. Stir a lot and the water volume sinks a little, only then does it become a tasty drink plus you get more liquid intake from one drink. The other bonus is that with so much boiling water it takes ages to cool down to an undrinkeable temperature and can be sipped easily over a longer period.

My  friendly pharmacy unfortunately supplied 120 bottles of strawberry flavoured Fortijuice instead of mixed flavours. After a couple of bottles I couldn't stand it anymore because even as juice it is extremely powdery, and the only suggestion the upper IG team dietician would make was turn the 120 bottles into a jelly ( 1 year supply of strawberry jelly - I don't think so). So the trick is to get 2 bottles into one drinking flask topped up with water to heavily dilute and which removed the powder taste. I take the flask on long walks or even sip away at home, so again both more liquid and balanced nutrition with energy. 
 

I think these tips may apply to post op patients as well as myself in pre op chemo. 

Walter Mc 

Hi Hills x 

tips for putting on the calories if using the Aymes actasolve savoury powder soup and Fortijuice drinks prescribed under NHS.

I think these tips may be out there already but.....

Aymes says add something like 200ml boiling water. The soup is both very thick and powdery and not at all tasty. So what I do is use a 500ml cup and add the portion of Aymes plus a much more tasty packet powder soup from our supermarket. (Not allowed to advertise names) Mix the two powders together then fill the 500ml cup up to the top with boiling water. Stir a lot and the water volume sinks a little, only then does it become a tasty drink plus you get more liquid intake from one drink. The other bonus is that with so much boiling water it takes ages to cool down to an undrinkeable temperature and can be sipped easily over a longer period.

My  friendly pharmacy unfortunately supplied 120 bottles of strawberry flavoured Fortijuice instead of mixed flavours. After a couple of bottles I couldn't stand it anymore because even as juice it is extremely powdery, and the only suggestion the upper IG team dietician would make was turn the 120 bottles into a jelly ( 1 year supply of strawberry jelly - I don't think so). So the trick is to get 2 bottles into one drinking flask topped up with water to heavily dilute and which removed the powder taste. I take the flask on long walks or even sip away at home, so again both more liquid and balanced nutrition with energy. 
 

I think these tips may apply to post op patients as well as myself in pre op chemo. 

Walter Mc