Hi My ex husband has Barretts esophogus which is a pre cancerous condition of the eosphagus. 

I am sorry to hear about your diagnosis and I hope you find the advice and information you are looking for.

I would really appreciate it if you could share any of what you are  going through and what has helped you cope with your condition up until now.  I personally think being physically fit is a very good thing and so is having a positive mental attitude.  It will help you in your fight agianst your disease. Never give up.

Hi

there are a lot of things unsaid. One is nutrition. Very difficult to eat so dietician can prescribe top up drinks so he can get up to the necessary 2500 calls per day in a nutritious manner. The NHS has taken weeks to sort this so in the meantime I bought their recommended Nutritia supplement drinks off Amazon while waiting for the prescription. I need 4 bottles per day plus soft food to get a nutritious balanced diet. It is not cheap but better than waiting. If daily diet is at 2500 calls it gives enough stamina for me to focus on getting exercise. Also omaprazene is prescribed for acid reflux. It wasn't enough for me at 20mg per day so my doctor said I can double up.

Hi Walter-Mc,

My husband was diagnosed with Oesophageal cancer last October aged 62.It was a complete shock as his only symptom was a feeling of food being stuck in his throat.  His and indeed our journey has been and still is a long one. He had lots of tests and then a staging laporoscopy in December 2020. He was told on 30th December he was on a curative pathway. He had chemo from end of January for 8 weeks. FLOT x 4. This was successful in shrinking the tumour. He has an Oesophagectomy on 4th May. There were unusual complications a week after the op which I won't go into. The main thing is he is now on the post op chemo (started last Friday) and the actual operation was successful at removing all of the tumour. He was T3 N1 M0  the N1 was query lymph nodes. After op T2 N0 M0. He is also able to eat normal food just smaller portions.

So in answer to your questions yes there are people who have a successful outcome. We are still on the road but if you type in RayB cancer chat in the search engine you should find the chat which Hilts has named the 'Oesophageal Club'! The answer to your question re fitness is yes, yes and yes. My husband was fit and that is one of the tests they carry out. I'm convinced if my husband hadn't have been fit beforehand he wouldn't have survived the complications that followed. Also he was hitting all the markers post op and exceeding all expectations. Many on the other chat have advocated getting fit. Also I would suggest that you have all your vaccinations up to date including pneumonia. The other good thing to do if you can is gain extra muscle and weight. My husband was fortunate that he could still eat and he put on 1 and half stones. He wasn't overweight before so it does depend on the individual. Most people seem to report that after 2nd cycle eating becomes easier. My husband found that too even though he could eat it was sometimes difficult. 

Because of what he's been through he lost more weight and muscle (a longer stay in hospital) so again preparation helped. Also the emotional side cannot be underestimated but he has a very pragmatic and logical outlook. Help is available though. I found MacMillan helpful. 
 

Regarding waiting I can't answer that as everyone is unique but I can say we had a long time from end of October until end of January when actual treatment commenced. This seems to be longer than most but COVID, staging, Christmas and a 2 week delay on the dpd test all contributed. What I can say is overall the NHS staff have been excellent and have saved my husbands life not once but three times.

Any other questions feel free to ask.

Keeping the faith and wishing you the best

Milly

. 
 

Hi Walter-Mc,

I'm pleased you found my reply helpful. Yes my husband had anti sickness meds and they do work. He had to have the additional ones which you take morning and evening. The cancer nurses and the helpline (rapid response) team are absolutely brilliant! It's definitely better to contact them with any concerns sooner rather than later. My husband takes warm water in flasks upstairs to drink during the night. Drinking lots of water definitely seems to help. If you want to ask any questions please feel free as I don't wish to bombard you with suggestions. You may find answers already posted on the other chat but it is a long link!

keeping the faith 

Milly

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 2^nd 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 – 1^st class! 

Hilts – holidays in the Sun!  What’s it like?

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 Bfg and all,

Congratulations! wonderful news on your marriage!

Thank you for the concise and clear information on the topic of 'dumping' - who'd have thought we would be discussing such matters! Overall my husband appears to be tolerating food well but he does sometimes experience the need to dash to the loo so might be a good idea to do a food diary for a while. On the subject of Vitamins do you still take any? Also when do you see anyone from hospital again?  He has felt better much in himself the last couple of days and we even went out yesterday and took a picnic!  My ankle is improving and the swelling is reduced and the bruising is going. Mustn't complain especially to you brave guys and gals! 
 

Keeping the faith

Milly

Hi Millie

We took advantage of the new legislation to have a civil partnership.  Nice, quick and easy - just sign on the dotted line and are now "legit" in the eyes of the law.  :-)

I get the symptoms - the rapid pulse, the feverish sweats and generally feeling like rubbish.  Occasionaly this will translate into an urgent trip to the loo.  I cut out all sugar related stuff for a many weeks post op which resolved the issues, and then gradually re-introduced sugar based food as a test to see if I still got the symptoms (I do, but not as frequently).  

I do take daily vitamins (just regular stuff from a discount supermarket) but was recommended to take high level vitamin b tablets to help out with some peripheral neuropathy after the final chemo cycle.  There's no real evidence, just anecdotal that it helps.

I've had a video meeting with my surgeon 2 weeks after the final cycle and another with the oncologist.  Surgeon doesn't want to see me again for another 3 months, and the oncologist wants another CT scan just to act as a baseline (but that won't be till early September).  Apart from that, it's just keeping an eye on any recurring symptons as scans will only highlight the scar tissue.

Cheers

bfg

Hi Bfg,

Thanks for the info, re vitamin  B12 that's interesting. I wonder if it's worth taking anyway during chemo?He could ask dietician on Friday. I'll do a bit of research lol. Yes my husband has had one bad episode and a few which was mainly rushing to the loo. He has lost 2 stones through all what he's been through so a good job he gained one and half before op! He lost a few pounds during first few days of this cycle. But has put a couple back on. I'm baking cakes and making milk shakes with ice cream in and he appears to tolerate these. As I say overall eating is much better than we expected. He is about 14 weeks post first and nearly 8 post 3rd op. Remarkable after all he's been through. You guys have helped me enormously as it's such a long journey but so many positive outcomes and support for everyone whatever their situation.

Keeping the faith

Milly