Hello, advice about palliative treatments please

Hi, I'm really sorry you are going through this. My husband was diagnosed with a bulky T3 N3 M0 tumour in late December 2022. His was 12 cm. The only difference was that he was 54. We had discussions with the surgeon before they decided to go ahead with the surgery (because the chemo did an amazing job) about the other options if surgery wasn't an option. They mentioned a stent if swallowing became impossible, does he also have a feeding tube? They should have done genetic testing on the mass to see if immunotherapy is an option as this can carry on for as long as it is working. I'm sorry that I don't have any other advice.

Try to look after yourself, take a break if you have someone else to sit with him for an hour or so. The job of a carer is hard, but you are not alone. There are plenty of people on here going through the same thing and will be here if you need us for anything. 

Take care, 

Steph

Thanks so much  for this information and support. I’m going to read up on immunotherapy in case that is an option. He was definitely not strong enough for the operation but I’m glad to hear that your husband was able to have it. He hasn’t got a tube as yet but although he can swallow better with the stent he hasn’t got an appetite (except for chocolate!) and says he’s feels full so I’m thinking it may be something to consider if his appetite doesn’t pick up.

Hi Birder 1056

the chemo didn’t work for me. I was inoperable but I’m almost finished 2 years of immunotherapy and had a scan last week I continue to be disease free.

I’m on Nivolumab every 4 weeks with very little side effects.  Just a little tiredness. 
I hope this is helpful.

good luck

Hilary 

I hope the hospital are monitoring your husband's weight. He needs to start supplemental feeding early before losing too much weight as it is then hard to get that weight back. The feeding tube my husband had didn't go into the stomach, but into the first part of his small bowel, the jejunum. This type of feeding is also known as post-pyloric or trans-pyloric feeding. It helps when it goes to here as it won't make him feel full. It can just drip slowly via the pump all night and give additional nutrition. We used it as a main feed for a while, but also as additional calories when he could eat, but didn't want to eat much. The tube can be put in through the nose or they could do a small procedure and put in through his belly. My husband tolerated the nasal tube for a while, but he didn't like the way it hold the world he was sick. The tummy tube was very easy to look after and worked much better for us. Hope this helps. 

Thanks for this Hilary, this sounds a promising option and I will research Nivolumab . I’m glad it’s working for you with few side effects, this is something he wants to avoid as much as possible. The chemotherapy had very bad issues with the effects on his nerves and sickness that couldn’t be controlled by drugs

Thanks for the tube info. He is very lucky in that he’s had dietitian advice from day one. Remarkably his weight hasn’t gone down that much from the initial drop but he is pretty small and slight so even a kg or 2 makes a difference. He has the fruit flavoured supplements which he can tolerate occasionally , he dislikes the shakes and soups. It’s somewhat like getting my 7yr old granddaughter to eat veg. There are good days and bad days like everyone but it’s good to know there are positive experiences with the tubes. He was offered the NJ feeding tube pre staging last year and was very against it . It’s good to know that you can eat as well with it. I suspect if his weight does drop off more despite the chocolate he may be more open to the tube.

Hi Hilary

Did you have chemo first then go on to have immunotherapy, did you test positive for immunotherapy?

My husband is currently only having chemo, just had 3rd cycle.

Angie