Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Stage 4 Esophageal Cancer

s747
Posted by

Auldfarrrt,

I'm sorry to hear about your diagnosis. It is a horrible and difficult time. 

Regarding chemotherapy, you can always try it and if it does not sit well with you, stop it.

Ultimately, your quality of life is the most important thing. There is no point, in my opinion, having it if it is going to make you feel worse. Your family will want you to have it, but, only if you can tolerate it. 

All the best.

Auldfarrt
Posted by

Hi Caroline,

I saw my oncologist yesterday, Wednesday. It was a really good meeting.

Apparently, because of a particular protein found in my blood (I think it’s HER3, or something similar), they have changed the proposed drugs for my chemo. treatment. One of these new drugs can have a weakening effect on the heart, and as I’ve had a couple of heart issues in the past (mechanical aortic valve and endocarditis, a couple of years ago), I’m now more concerned about my ticker than the side effects of the chemo.

We talked things around quite a bit, including delaying things for up to 3 months. Where we’ve ended up is to delay any decision for about 5 weeks as I’m due another scan in 4 weeks and then another consultation the following week. By that time they will also have the results of a recent echocardiogram, and we can then have a further discussion on the way forward. My feeling is that if there is a high possibility of an impact on my heart, I may not go for treatment, but if the probability is relatively low, I will probably go for at least one cycle and see what happens.

Strangely enough, the consultant encourage myself and my wife to get away on holiday for a week or so, we’ve therefore taken her up on that.

I hope your dad makes the right decision for him. At the end of the day, I think that if you believe that the decision you make is the right one, then it is. You can also remind your dad that if he starts chemo. he can stop it whenever he wants if the side effects are too much.

All the very best to you and your dad.

blossomstix
Posted by

Hi Pete G

i have bone mets too (to my hip) and I’ve already had a hip replacement then radiotherapy again and then a horrific 12 hour pelvictomy as it grew back. The hemipelvectomy was worse than the oesophagectomy but as I had a single mets it was worth a try. 

I live in in constant pain from my pelvic surgery but I am still glad to be here. I am in amitripyline for nerve pain amongst other meds but it has really helped with the sleep. You should see your gp as not sleeping makes depression worse and is an important part of your immune system. 

I am now going into a trial or immunotherapy. I never give up fighting but have very bad days too. You are not alone. You can also call Macmillan’s for emotional support or the oesophageal patients association. 

All the best 

blossom 

Shanney70
Posted by

Hi Martin 

my ex husband was dis gnoses with stage 3 oesophageal cancer inoperable last September spreading to lymph nodes and his lungs. He has had 3 sessions of chemo plus daily tablets and although he didn’t really initially have any side effect the last time his hands and feet started to burn and he suffered from hand foot syndrome. At the same time he got a small cut on his toe that has now turned his toe black and necrosed due to his diabetes. 

Currently he is on oramorphine and MST daily and has got the ok to start Chemo again next Tuesday. His recent scan has shown the rumour being contained and stable (whatever that means) 

He was very low following diagnose and chemo due to lethargy and unable to work properly with his toe BUT I have sort of taken over his care bullying him a bit to eat healthy because he lives in his own and hadn’t been taking care of himself and now he is wanting g the chemo and his mindset has changed to wanting to live with cancer rather than how long he had left to live. He starts having herceptin next week so we have fingers crossed it will have a positive effect 

I wish you all the best, I feel strength, hope and your mindset will help you make the right decision for you. But remember There are side effects to everything doesn’t mean we will all get them my husband had none until the 3rd chemo and if he had told the Drs first sign of burning  it wouldn’t have got so bad but he kept quite for weeks but he now knows he has to monitor his bodies responses 

Good luck 

cath 

Cath 
Auldfarrt
Posted by

Thanks Cath.

The last time I saw my oncologist, she told me that apparently I had a protein in my blood called HER2 which meant that they would need to change the proposed chemo drugs to cisplatin, capecitabine and herceptin. She also said that because I have minimal symptoms and no vital organs are affected by the metastases, that the decision could be delayed to a later date.

What we have agreed is that I will have another scan in about two weeks and then see her again a week or so after that. In the mean time she will get the results of an echo cardiogram that I had done at the end of January to see the strength of my heart ( I had my aortic valve replaced in 2005) as the herceptin can affect the heart. Anyway she said that once this info. has been gathered and analysed we can discuss the way forward. In the meantime she told us to get away and relax for a bit. So we had a few days in Suffolk last week and going to have a week in Spain next week.

I must admit the longer I have left the decision, the more inclined I am to saying yes to the chemo. but still have to actually make the decision.

Thanks again Cath  and the best of luck to your ex. 

Bird sung
Posted by

Dear Cath,

i am sorry to fear that . Your husband need a lot of caring and support at the time being . 

I am going fir a pet scan next Tuesday as per advised by my surgeon . So far my results were good  and the tumours has scrink down.

i am grateful as my family members were giving me full back up and now it’s me who have to stay positive . I had stop working since last October 2018.

please take care your husband and advise him not to stress and follow the advise of your doctor 

all the best 

Shanney70
Posted by

He has the same HER2 so having the Herceptin this time there are really good reviews about it 

I am trying to get him on here because I feel it would do him good to speak to others in the same boat. 

Have a great time in Spain, stay positive 

cath 

Cath 
Shanney70
Posted by

Absolutely I’m taking over a lot for him so all he needs to think about is keeping healthy. I keep telling him he has the best ex wife he he 

good luck to you stay positive 

cath 

Cath 
Gibbo9
Posted by

Hi Blossom

Thanks for replying.

I have been told that they can do nothing for me long term. Any radiotherapy or chemo is just to control symptoms or buy me a bit more time.

I am seeing the oncologist tomorrow as my symptoms have changed. I have a lot of pain in my rib area on the left hand side and am wondering if they can control the symptoms with radiotherapy.

Chemo seems increasingly unlikely I would say as the pain has probably arrived too soon but I'm not sure.

Keep thinking of the title of that old Beatles song. Here there and everywhere. Black humour as its a great track.

Sorry to hear that you are in pain. Currently I take gabapentin and slow release morphine. I have some oramorph but I stopped taking it as I overdosed last week. It was horrid, a paramedic came out and shine a torch in my eyes and my son said my pupils were like pinpricks.

I wish you the very best of luck with the trial.

This is a horrible disease (understatement), the mental side of which is very very challenging. I am very nervous today due to oncologist visit tomorrow.

Kimd regards, hope you are having a good day today

Pete G

Auldfarrt
Posted by

I’m sorry, but I’m feeling sorry for myself. I’m probably slightly inebriated, having had really nice lunch on our last day in Spain and not looking forward to the future. At the end of the day though, no-one can actually help with the cr@p to come. You are on your own, despite all the feelings of good will from friends and family. What will be, will be. I just hope it’s  not too horrible for me or my wife and kids. 

Sorry

,  

Garyb
Posted by

Auldfarrt,

i think your honesty will be appreciated by many here that are in or could be in similar positions. While the sun shines enjoy it, be strong if you can and those around you will share in that with you. I hope you find some peace.

kind regards 

Nothing worthwhile comes easy.
Gibbo9
Posted by

Hi Auldfarrt. 

Cant believe that's your real name!

I have sent you a friendship request in case you would like to communicate privately or even have a chat on the phone at a future date. 

I am in exactly the same position as you and believe me it is ok to feel sorry for yourself.

I get all sorts of responses from people but ultimately no one knows what to say and nothing anyone says is resonating. Maybe this adds to the sense of isolation, the sense of feeling alone although you are absolutely right, we come into this world on our own and have to leave it on our own

My ex- partner wasn't very good at dealing with this stuff and left last July just before I had my gullet removed in what was to be, alas, an unsuccessful operation.I saw the consultant a couple of weeks ago and he said the cancer was really advanced when they took the gullet out?

So I live on my own which makes it easier in a way as I don't have to put on a performance when I don't feel up to it.

I am waffling now, which I assume is allowed, so gonna sign off.

Do get in touch if you feel inclined

That said, I've got 3 kids and some good mates so I often have company

Best wishes

Pete G

Auldfarrt
Posted by

Hi Pete,

It's not my real name, but probably an apt description these days. I'll sign off with my real name.

I'm really sorry that your operation wasn't successful, that's a real shame.

I was told that after a PET scan which showed that the cancer had affect a couple of lymph nodes, that they wouldn't operate as it would not be successful having got into the lymphatic system. That therefore left chemo as the only course of action. I've not started that yet, I've got another meeting with the consultant on April 10th to try and make a decision as to whether I go for it or not. 

When I was first diagnosed at the end of December, and was told it was terminal, and that if I had chemo. it would give me 9-12 months as opposed to 6-9 months if I didn't. I was thinking what the hell was the point of probably feeling absolutely rubbish (crap was the word that first came to mind) for maybe 6 months for the sake of maybe another 3 months. 

The longer I've gone on ( I was told that I had maybe 3 months to make up my mind) the more I've thought I might try it, and see what happens. They've said I can stop at any time, and that after 3 cycles they'll scan me again to see if it's having any effect. So we'll see. I think I've probably decided to give it a go because of my wife and kids (kids, huh, they're grown adults with their own families, I'm getting on for 70). Plus the fact, the medics can only predict on averages with things like this, so who knows.

Fortunately, two of the three kids live in the village, and and generally try and keep my mind off thinking about it too much. Trying to live as normal a life as I can. 

I think you can probably tell I'm feeling a bit more positive about things at the moment, but we'll see how long that lasts.

You take care, and good luck. If you want to "talk" more, no problem

All the best

Martin

Gibbo9
Posted by

Hi Martin and thanks for your post.

I hope you enjoyed your week in Spain. Apparently, the spaniards are developing a reputation for being anti- British , did you find any evidence of this?

Yeah the chemo, what to do. My Oncologist said exactly the same and I'm gonna do the same as you , that is have the first lot and see how it goes but I don't think an extra 3 months should be sneezed at. Ultimately when it's my time it's my time, that's the way I see it.

I have been really content today.

When I first got the bad news I hit the bottle and  started smoking again. Although I am still smoking I no longer drink in huge amounts. When I told the cancer nurse I was drinking heavily his exact words back to me were,' pete, whatever it takes'

I find that this disease is hugely up in the head. Every night before I go to sleep I say to myself that I am going to be here tomorrow. 

I have just had radiotherapy but it is only for pain control.

I know that the cancer is up to its mischief but my first goal is to get to June 8th so I can give my daughter away at her wedding.

We lose an hour tonight Martin as the clocks go forward. As if we can afford it!!!Ha Ha

I am 63 so only a few years younger than you. My best mate is 69 .

Take Care Martin, enjoy the rest of this beautiful day. 

Best Wishes

Pete

Auldfarrt
Posted by

Hi Pete,

Spain was very good thanks despite my little self-pitying episode. We've been going to the same place at least once a year for the last 20 years, and the Spanish have always been pleasant and friendly.

I'm slowly getting used to the idea of what I have, although I've also got prostate cancer (had it for the last 5 years and it's controlled via hormone treatment). I have moments of reflection but generally just try to carry on as normal as possible. That probably won't be possible once I start chemo. but we'll see.

When I was first told I had this cancer, I was shell-shocked and struggled to believe it. Even now I don't think it's real. I can eat generally quite normally although I need to stear things I can't chew easily and just watch the portion size. If I find I'm getting "bloated" if that's the right description, I find that a can of lemonade helps.

We've a full house today as all the family are around with my two daughters cooking Sunday lunch for my wife (and the rest of us, I trust) and I assume my son will do the washing up (huh). 

Anyway, "talk" soon and take care.

Kindest regards

Martin