Second Opinion

Sounds like we are I. The same boat. There seems to be lots on line about sufferers who have been able to have had an Ivor Lewis procedure but not much about palliative care and what comes after the first line treatment.

Did your Mum have 12 sessions of  Folfox?

I will happily share the outcome of the second opinion when I receive it, but I will not be seeking it until my current treatment ends toward middle/end of May.

i think the current plan is to have a three month break in treatment and to scan to see what is happening in order to decide what’s next, but the what’s next doesn’t seem to be at all clear.

i assume your Mum was not a candidate for immunotherapy?

I agree with you. Most users of this forum are pre or post surgery patients or the carers of patients unsuitable for surgery and seeking hope. 
I joined myself in the hope of hearing anecdotal evidence from some of the patients I am told are doing “really, really well and that there are lots of things that can be done” usually by a good intentioned cancer nurse who cannot answer when asked to be specific about what these therapies are. 
The truth is there is no effective second line treatment for recurrent disease. By that I mean one that prolongs life and quality of life for many months. 
There is as you refer to, some hope of this for patients with metastatic disease that will respond to targetted therapies such as immunology.

Thanks so much for your thoughtful reply — it’s really helpful.

We’ve definitely been made aware of the common side effects, and it seems like neuropathy is the biggest one to look out for, followed by fatigue and stomach issues. He does have a J tube right now, so if appetite becomes a problem, we’re covered on that front. We’re hoping that once treatment starts to take effect on the residual tumor, he’ll be able to eat a bit better, some food is still getting stuck on its way down despite his balloon dilation a few weeks ago.

Did you notice any improvement in your swallowing or food not getting stuck after a few doses in?

Also, if you don’t mind me asking — you mentioned that by the second week (your “rest” week after being disconnected), you were feeling more like yourself. I ask because my wedding is coming up, and the team is hoping to give him a break that week. If he gets disconnected on a Monday, would you say you felt more back to normal by the following Monday? Just trying to figure out the best timing for the week off so he can be as comfortable and present as possible.

Thanks again x

Yes during the second week from the Monday I have been probably 85-90% some odd waves of nausea and tire easily, but if your Dad is in a routine and paces himself he should be ok.

i had chemo paused for two weeks whilst I had operations to install a portocath and to remove my slipped stents. I am in week 3 since my last chemo and feel as though I could do a wedding, might be worth factoring a couple of hours in the day where your dad could grab some zzzzeds

with regard to swallowing the stent sorted this but by treatment 6 the tumour had shrunk to the point where the stents had slipped into my stomach- since then I have been eating normally so clearly the chemo has shrunk the tumour to the point I can eat normally- I hope this helps

this greatly helps! I hope with 2-3 doses he notices a massive improvement. I think they said they can do a dilation then again with the balloon to help too,

Luckily for the wedding the hotel is on site so definitely a good idea for him to sneak a nap in during the day.

How was your appetite during the treatment? Did you notice it improve during that 3 week break?

My appetite is unpredictable but I have conditioned myself that good calorie intake is part of the medicine regime that my body needs to cope with the chemo and fight the cancer.

i never skip a meal and try and snack in between.

pasta ready meals - with some extra cheese sauce are my go to if appetite isn’t great and I find having a distraction eg tv and taking my time helps.

taste buds get distorted and sometimes I have what is called first bite syndrome where you get a shooting pain at the back of your jaw when taking the first mouthful of food. It’s something not do with saliva glands. Frequent tooth brushing and fruit pastilles can help with taste buds.

eating chilled food can be uncomfortable- I usually have a diluted fresh apple juice with my meal to help wash things down and keep up fluid intake.

having friendly patient support with regular eating with  food options has been helpful - I can see why people on there own without support end up skipping meals and losing weight. I am not always good company but gentle encouragement and reminder that I need it normally ends with an empty plate.

Thankyou for your reply.

She has CAPOX chemo and immunotherapy every 3 weeks, on a 6 month plan, so due to finish mid May. After that they will review and possibly continue with immunotherapy. So we are looking at what treatment possibilities/ second opinions  there might be for after the chemo finishes. 

Many thanks for your help