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 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

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