Unresectable esophageal adenocarcinoma

my husband diagnosed inoperable in january with tumour in lining of oesophagus

has had chemo followed by immunotherapy and capetibane tablets

so approx 6 sessions

his is ioperable because of where it is

the treatment has worked as his lung nodes gone and tumour shrunk

his side effect in last 6 weeks are fatigues sleeps most of the day and some confusion

Our oncologist is superb plays around with meds to help him

but the fatigue and some confusion is worrying

but he is alive and we can enjoy our time

i wish you the same when you read some of th journeys others are on we are grateful

love to you and hope the journey goes well

There are a number of reasons why a tumour is deemed inoperable. If it is locally advanced with evidence of spread it may be unethical to put the patient through the rigours of surgery when there is high risk of recurrence. Even if after a FLOT regimen there is no pathological evidence of residual disease.

When you gave your consent for FLOT there should be an explanation of what the aim or reason of the treatment is. It may have been given with curative intent? If you have not already asked, and I am guessing you have, I would ask your MDT. 

Please treat with caution any advice from this forum,including mine. 

Thank your for taking the time to respond to my post, it gives me more hope that mine may shrink. I believe that if the FLOT does not succeed then it may be Carboplatin, Paclitaxel and radiotherapy.

wishing your husband a continuing recovery x

Rosiee

Thank for taking the time to respond to my post. It was the MDT that drove the FLOT decision with the view to possibly becoming respectability. I met the Oncologist the day before the MDT meeting and he was not going down the FLOT route. I realise that not all are experts on here but it is often reassuring to hear of others success in fighting this horrendous form of cancer.

I have spent hour googling and understanding all of the acronyms,. I have looked at survival rate stats but most of those are dated, I'm sure that the treatment has significantly advances in the last 20 years.

Kind regard

Graham

Hi Graham,

I am pleased to hear you are doing so well with your flot treatment. I am one of those type of people that do not post much but I come on here now and again to read the stories of what other families are going through.

my dad in oct 23 was diagnosed with adenocarcinoma at the GOJ.(66)  pet scan showed it has spread to a lymph node in his neck so was deemed inoperable and was given a poor prognosis. He was put on palliative capox chemo ( not flot which is pre operative ) and after 3 rounds his ct scan showed no progression of the disease and his lymph node had shrunk to normal size.  

that said after consistently asking the question of wishing to hage the op, and nearly 2 years down the line he is now on flot chemo with the view to having the tumour removed. So whoever is reading this please do not give up hope.  We have been told the op doesn’t give any guarantees but as a family we have decided to go for it now being given the opportunity. 

he is now finishing round 4 and like yourself he is feeling terrible with the injections.

reading between the lines, hopefully they are going to give you a rescan to reassess the situation once you have completed treated.  

Wishing u all the very best 

Thank to so much for responding to my post. That is great news for your Dad. Yes my last treatment of FLOT IS ON THE 28th August. I have a meeting next week with my Oncologist, I suspect that we discuss the date of the PET scan. The good news is that just before my last session of chemo last Thursday I had three consecutive days pain free. I've had a gnarling back pain for months prior to the chemo, so I'm taking that as the FLOT IS doing some good. 

Your Dads good news gives me even more hope.

Thank you, kind regards Graham.

No problem Graham. My dad’s eating has been a struggle since Christmas. I’ll not bore u with it all, but now he’s 7 weeks after his first round of flot and able to eat anything he wants now. Although he doesn’t feel like it until the last couple of days like you before the next round of chemo. 

Hi Thog10

My husband’s OC was diagnosed in 2008 so things have moved on a lot since then.  He was told it was terminal and palliative chemo was offered - he had engorged lymph nodes that prevented surgery.  He had 6 cycles of ECX, tough but effective, and we did everything we could to ‘feed’ it anything anti carcinogenic.

After the 6 cycles the oncologist was so pleased with progress he arranged for 2 more. The next scan brought almost unbelievable news, the lymph nodes had returned to normal and the tumour had virtually disappeared.  The surgeon who had to say no initially reviewed the results and agreed to operate.  The oesophagectomy was done in 2009 and my husband is still here living life gratefully each day.

I know his case was different to yours but they all are, it’s so personal.  I just wanted to share a positive outcome, they need to be heard.

I really hope you get good results and you get back on the golf course soon. Your fitness will be a great bonus with any treatment.

All the very best x

1. Jayceeh thank you so much for responding to my post. It gives me even more hope as I read positive stories like yours. I have my 4th and final FLOT on the 28th August and my scan is planned for the 8th Sept. I've seen my oncologist today, she stated that even if it's still untestable there are still several other options that can shrink it, it makes it even more positive reading several stories of tumours shrinking from palliative chemo.

I hope all goes well for you, there are so many more options available now than in 2008 (and so there should be). 
I’m glad I was able to give you more hope, it’s so important to keep positive and meet the challenges as they arise.  
Do let us know how your scan goes. x