Hello

Hello Brysol

I hope you do not mind me responding as I had a different kind of cancer but I noticed that you have not yet had a reply so hopefully this will bump your post to the top again.

I am sorry to see that you have been undergoing treatment for oesophageal cancer but it is great news that the chemo has significantly reduced the tumours.  How are you finding the chemo? I had chemo last year and also had carboplatin as part of it. I hope that the side effects are manageable. 

Hopefully someone will come along now who has had similar treatment but in the meantime if there is anything else you need, please do ask. 

I wish you well with your continuing treatment.

Jane

Jane, thanks for the reply.  I hope your journey has been successful.

My treatment reaction could not have been better. I was very fit, good weight (although lost too much before treatment- that's come back on), and healthy, apart from the cancer!  I have only had fatigue on day 4 and day 5, I take etoposide tablets day 2 and 3, and I think it's the cumulative impact and stopping the steroid sickness.  I had some stomach issue on the first treatment, but think that was anxiety.

I am anxious again as can see treatment coming to and end, but if it continues shrinking then things could be positive. I'm learning mindfulness, and focusing on what I know and not on what I don't, and can't change. 

My life would have been over by Xmas, so I'm lucky and I've seen it extended, hopefully that progress will continue, but I accept that this is incurable and will get me at some point, just trying to kick that down the road.

All the best, Liam

Hi Liam

I am glad that you are coping well with the treatment so far. People seem to vary so much with their chemo treatments. 

I understand that it can make you feel anxious coming to the end of treatment but I am sure that they will be monitoring you regularly and if there are any concerns then they will act on them. Fingers crossed for you that they keep shrinking and the response so far is encouraging. I myself am on 12 week checks at the moment and they are pretty thorough and in between I can call with anything concerning. 

Learning Mindfulness seems a good plan. Anything that helps and it's something I have considered myself. Somethings can't be changed in life but I am trying to look at how I react to them and to find coping mechanisms. I found that when treatment stopped and also in between treatments, that was when I had a few wobbles and it was like I needed to process everything that had happened. Don't be afraid to reach out if you do need support. 

There is some counselling that can be arranged through Macmillan so I will pop a link below in case you think it may help, either now or in the future.

Free specialist counselling for people with cancer | Macmillan Cancer Support

We also have a forum on here for people who have an Incurable diagnosis and it may be something that would help. 

(+) Living with incurable cancer forum - patients only - Macmillan Online Community

Lastly there is the Support Line (number below) and they would be able to tell you if there is anything in your own area that would help.

Jane

Hi Brysol 

Welcome and Thank you for sharing the start of your Journey with us, I am sorry that your diagnosis includes secondaries, I hope that your oncology team are able to work with you to give you the best treatment possible. The knowledge that the chemo has already shrunk the tumours , I hope is a real positive for you at such a difficult time. 

My Husband Dal, was diagnosed with Stage 4 Oesophageal Cancer with secondaries in his lung, liver and lymph nodes,T3 N3 M1 GOJ, he has been on chemo FLOT and after a while was placed on a mixture of FLOT and Herceptin, Now he is on a Maintenance Immunotherapy treatment which he continues to have fortnightly.  It has been 3 years and 4 months since his original diagnosis, and he has beaten his considered prognosis by an amazing amount.  

I do hope that your continued treatment has the same sort of outcome that he has. 

I will be interested to read more of your journey, when you are ready to share. 

Just remember that the Macmillan team are here for you, any questions, concerns or niggling issues can be called through to the team using the number in my signature. 

Good Luck 

Lowe'

Thanks for your husband story and experience, its great to hear how he is fighting this and throwing away the prognosis.  My cancer is small cell, so different to treat, but it's really uplifting to hear such positive stories and helps my mental health.  I've still 2 chemo's to go, so I'm a way away from my next steps, I'm hoping for an even better position at that point, it's moving the right way, but as we all know cancer is very individual.

Will continue to update as I move through my treatment, and will take the advice and discuss with my oncologist.

Thanks

Liam