Hi Rose, 

I don't like to comment because everyone's story is different and unfortunately my dad 58 wasn't lucky with this type of cancer, but only because it had spread. Praying your mums is still in one place and can be treated. 
I wanted more to comment on the eating and drinking, this was the most painful part for me to watch and my dad refused a line and continued to struggle every single meal, it was horrible. He did have a stent which worked and opened up for a short time but unfortunately he didn't have any appetite by then. 
Sending all my love and hope for your mum though. Every story is different and there are positives x

Thank you for the reply, I really appreciate you taking the time to do so. My mums has spread and is inoperable. She's having a stent fitted today, if it doesn't work then feeding tube to get her home. Did he have any radio or treatment? I think this week we will get to understand how long she's got. So very sad. Sorry to hear about your Dad xxx 

I'm so sorry for my slow reply. 
My dads had not spread when they found it and he was going to have the major operation, he went through intense chemo and radio every day for 5 weeks to be told only a few weeks before the op that it had spread everywhere. He was the strongest fittest man so it shows how aggressive this is. 
How did it go with the stent? Have you had anymore news? 
Soft with calories was so difficult and I know it's hard at the moment to get things, but marks and spencer do a full fat custard which is calorific. Have you had any of the meal replacement shakes from the doctor? Xx

Hi, how is it going for your mum? My husband was diagnosed with this cancer last April and passed away 2 weeks ago.  he was stage 4 when diagnosed  ( large tumors already in liver), had chemo which shrunk it for a while,  but unfortunately it took off again...some people do better then others with it, I wish her luck xx

Stent was successful, she's doing well at home. I'm making lots of high fat puréed dinners. She has shakes from doctors too. She's meeting her oncologist now, I'm in car park as can't go in because of covid but I'm hoping she will dial me in. She's trying to protect me but I need to hear it so I can support her fully. I'll keep you posted and thank you again for support x

So sorry to hear about your husband, thank you for the information I will share the outcome with my Mum as she's being seen now x Thank you for the support x

Hi Plebbs, my mums is in Liver also. She starts chemo in 2 weeks, any advice for supporting her that helped your husband?

Oh Rose..

I am so sorry about your poor Mum. I hate hearing about people's precious mum and/or  dad being struck by this disgusting disease. Both my parents had cancer dad died 2012 after stomach cancer for a number of years and mum passed away 9 April not from her stomach cancer but from Covid 19 it's been a hideous year. 
I truly wish the best for your mum. I hope all her treatments will control this horrid thing. Take care and if you need to talk I'll be there.

helen

Hi Rose, 

My husband (62 and reasonably active on diagnosis) had 6 rounds of ecx chemo (his cancer is oesophagus stomach junction with mets in liver). He had IV cisplatin and Epirubacin 3 weekly and caceptabine oral cemo every day. Palliative care as his is stage 4.

From his experience I would say to your Mum trust her instincts, if she doesn't feel well during the treatment don't be scared to ask for a break and don't be frightened  to ask questions.  There was a Doctor on the chemo unit who acted as a go between us and the oncologist in between treatments if we  needed help or advice. 

If she has a sore mouth ask for mouthwash, for sore fingers (the skin split on the ends of his) they have a medicated tape which should be available on prescription.  For sore /dry skin on the hands and feet there is a fabulous cream which you can buy on Amazon called udderley smooth.

Lastly if she's able to eat reasonably well at this stage try to build her up because as the treatment goes on in our experience the desire to eat diminishes.

I hope she gets on ok with the treatment and best wishes to you both.

Sorry got delayed reply, sorry to hear about your awful time. Thank you for your kind words x 

Hi Daisy, 

Thank you for your message. Mum was diagnosed April 1st, she was admitted into hospital as emergency as she stopped being able to swallow and was vomiting a lot of blood. It is squarmous cell carcinoma stage 4 spread to liver and nodes in lung chest and neck and suggestive developent in lungs. She had a stent fitted and has since been able to eat purée foods. She started palliative chemo on Monday Cisplatin/Capebitine and so far is doing ok. The unknown is so frightening as to when she won't be so well but I guess we just take each day. We've already got the underly smooth, mum calls it utterly bitterly lol. 
sorry to hear about your husband, was it a long illness? 

Hi Rose,

Hope you and your family are well. I was hoping you would be able to offer me some advice as on the 20th of January my Dad was diagnosed with stage 4 oesophageal squamous cell carcinoma which has spread to distant lymph nodes in his neck. Since diagnosis my Dad's cancer has progressed very fast and has gone form eating soft foods to only liquids. He is now due to have a stent. 
 

I wanted to ask about the Cisplatin and capecitabine, my Dad seemed fairly fit before diagnosis and now already appears very tired- are the side effects of this regimen tolerable and had it had a positive effect on all tumours? 
 

R

x

Hi Rose,

Hope you and your family are well. I was hoping you would be able to offer me some advice as on the 20th of January my Dad was diagnosed with stage 4 oesophageal squamous cell carcinoma which has spread to distant lymph nodes in his neck. Since diagnosis my Dad's cancer has progressed very fast and has gone form eating soft foods to only liquids. He is now due to have a stent. 
 

I wanted to ask about the Cisplatin and capecitabine, my Dad seemed fairly fit before diagnosis and now already appears very tired- are the side effects of this regimen tolerable and had it had a positive effect on all tumours? 
 

R

x

Hi Rosemary, my husband is on Capecitabine, (EOX) for stage four oesophageal, and it made him really tired on his second round, so much so that he stopped for couple of weeks and is now on a reduced dose to help him tolerate it better. He also lost his appetite completely but this has since returned so we know it is the chemo. They didn't weigh him before the second round and we wonder if the dose took into account his dramatic loss of weight...? Not sure, but anyhow you could ask about reducing if you feel he is not coping well- it's about balancing treatment and living somewhat comfortably at the same time. As for outcome we are only on round three so no scan yet to see if it is working. 
Wishing your dad all the best x

Hi Rosemary 

Sorry you find yourself here. My mum cooed very well with the chemo until cycle 5 and she had bad sickness. Sadly the chemo didn't work for my Mum. She was offered immunotherapy but didn't make it. She died 28th November. Horrible horrible disease. Please ask any questions here to support you on anything and wishing your loved one all the best xxx 

Hi all, 

I only joined in July. There are soooo many of us on here in the 'Oesophageal club' - what on earth is going on!

My 56 yr old husband diagnosed in August. Now post op and had pre op FLOT chemo, starts the post op chemo on Monday ): we also have young kids. When we first started going to the unit, there were 3 other blokes, my husband being the oldest! With exactly the same.

As with any disease there are good outcomes and bad ones. Who knows how any of it will pan out?
what can I say.

Hi Daisy,

Thank you for being so kind and replying to my post. We’ve had a tough week. My dad had a stent put in last Friday, but by the time we got there he had already lost his appetite and was just on liquids. He lost 8kg over December/Jan and now another 2-3kg in the last two weeks. He was then allowed to start chemotherapy oxaliplatin and capecitabine this week but ended up in hospital for a couple of days because of his diabetes. 

It’s really interesting what you say about the dosage not being updated according to weight I will mention this to our oncology team. 

Now Dad is home from the hospital I’m hoping to build up his appetite but he did struggle to eat today-feel like his body is not taking well to it. 

Hope you all the best with your husbands treatment.

R Xx

I am so sorry to hear of your loss Rose, I really am. This disease is just so devastating. It is just awful. Our lives have been turned upside down since the diagnosis and the disease is so aggressive. My Dad went from soft food at the diagnosis to only liquids within two weeks. So has lost more weight in just these last couple of weeks. He had a stent put in last Friday which has caused him considerable pain but he has had oral morphine and co-codamol to manage this. Thankfully he was allowed to start chemotherapy at the beginning of this week. But then ended up having to stay in hospital for a couple of nights as his diabetes has been thrown completely off causing him to become hyperglycaemic which made him feel faint, by the time he was admitted into hospital he was severely dehydrated. I now hope we can build some strength back into him and get him somewhat back to where he was before his diagnosis. Before all this he was working seven days a week, he never got tired, always worked hard.

Xxx

Am so sorry you lost your mum, this is an awful disease. So sad x

Hi Daisey, 

How are you. Hope to find you and your husband doing well. My Dad has has had his second cycle of chemo of oxaliplatin and capecitabine (taken everyday).
My Dad seems to have gone down a similar path to your husband and has experienced more side effects this second cycle. A lots more fatigue and now also nausea. The stent he has also unfortunately continues to cause pain but we are told some people do experience prolonged pain. 
My dad takes steroids for 3 days after his chemo session. 
These keep him wide awake and he doesn't manage to sleep in the night either. Once he comes off these he is extremely fatigued and now also experiencing nausea. Really hope each cycle doesn't continue to get worse Xx