Oesophageal cancer

Hello EIB81

Welcome to the forum, it is a great place to learn some stuff that maybe you do not know?

I am really sorry to read of your Mum's OC diagnosis and to learn that it has spread to the lymph nodes, I know how frightening it is to hear that her condition is inoperable, but it is treatable and thankfully the treatment available now is especially good, although that does not mean that there are no side effects, everyone is different and they react differently to the treatment. Also different treatment is given by different hospitals depending on the tumour type. 

Just over a year ago, my husband was diagnosed with Stage 4 Oesophageal Cancer with secondaries in his lung, liver and lymph nodes, at the beginning of May 2020, T3N3M1 GOJ, without treatment he would not be with us now, with treatment, although the prognosis was still only 12-14 months, he is doing extremely well. He started on chemo, palliative FLOT and then went on to immunotherapy, Folfox Herceptin. He has had such good results it is amazing, he is tolerating treatment once a fortnight and other than one treatment holiday over Xmas he continues with this regime, his last treatment was his 26th treatment. His Tumours in the liver has reduced significantly, his OC tumour is stable, his lungs show no sign on the scan. His lymph nodes have reduced in size to almost normal and most importantly his bloods are exceptional.

Please don't be disappointed in yourself, this is your Mum, how else were you going to react? My world swallowed me whole when we got our news, and it took a while to get our heads around it and believe that we could fight this, tooth and nail. 

There are many positive stories on this forum, people who were diagnosed several years ago, it is heart warming to read them.

I hope your Mum continues to remain positive, it is very important I believe for that to continue to be the case, it will make all the difference with her treatment.

We are here for you, the Macmillan team can be contacted on the number in my signature, Mum may like to talk to them?

There is a huge amount of information available to both of you on this site, I know you say that you are a nurse, and you probably already have your own source, but once you have had a little while to read some of the other encouraging experiences on here, maybe you will come back and update us on how things are going, and if I can offer you any guidance on where to find any information I will be more than happy to.

Take care, 

Lowe'

Thank you so much for replying, it means so much to me to hear these stories. I am so sorry to hear about your husbands diagnosis.  However that sounds so positive how well he is responding to his treatment. I dont know what the future holds

 My mom starts her treatment on Friday - Xelox.  We are also waiting to find out if she is suitable for immunotherapy.

I believe it she is they will change her treatment.  She just wanted to get started so they will adjust if needed after 1st dose . She received an appointment for  a second PET scan today which concerned me. I have calculated it and it will be after cycle 3.of chemo. I am guessing its to see if the treatment is working??

I hope your husband continues to do well 

Does he experience many side effects ?

Hi

He hasn't experienced too many side effects... initially he had an upset stomach, and he occasionally has nose bleeds after treatment. 

He lost most of his hair, but kept a cap, and once he changed to immuno, his hair started growing back. Ocassionally he is tired too but not too much really.

You can read his story from the beginning here

I am just off to bed as have an awful cold, but I hope to read more on Your Mum's journey and I hope you she finds the treatment works for her...My husbands next treatment is also on Friday and whilst there is treatment to be had, we see that as a good sign. 

Good Luck