Hello everyone I'm Nev

Hi Nev, always sad to hear this sort of news on here.

However, having been diagnosed with the same condition, I have read many good news stories on here. 

Live each day as it comes and try not to let it govern what time you have. Who knows what cancer killing treatments are just around the corner. 

I don't get my meeting for the results of my tests and scans until next week. A bit apprehensive for sure but don't like the waiting. An endoscopy discovered a 3cm cancer just above my stomach, similar to yours I suppose.

Obviously I cannot answer your question about chemo because I don't know yet. Please keep posting in here though as your story will help others such as myself.

All the best going forward.

Thanks Lets stay positive 

Hi Nev

I am 72 years old and in relatively good health. I was diagnosed back in late January with a midway oesophageal stage 4 tumour (5cm), 2 lymph nodes (local) and bone metastasis to a bone in my back (early stage). Told it was not operable. This all came about after having difficulty swallowing solid food eg. Meat, bread etc.

I started an 6 cycle course of chemo and bone therapy on 14th March and have just completed my 2nd cycle on 4th April. Will finish the course sometime in July or August and the future will be determined from there dependant on how well I’m doing. 

I am currently being treated with Oxaliplatin (infusion at the hospital) and Capecitabine (tablets twice daily) also Denosumab for bone therapy.

There are side effects to the drugs but the main ones for me have been tingling hands and feet (neuropathy), I have my chemo on a Tuesday and by Saturday I am experiencing a lack of energy and fatigue for a couple of days with a lack of appetite. Just beginning to realise I should take it easy over that weekend and stay in bed if not feeling up to anything. Fortunately by the Monday I start to pick up again and by Tuesday I’m pretty much back to normal. One major benefit to the chemo happened within the first cycle, when I was able to eat normally again, so I can only assume the chemo is working and that the tumour is shrinking, although I won’t know for sure until I have another scan after my 3rd cycle.

So, in summary, I am happy with my progress to date and feel positive that the chemo is working.

I do hope this helps you, try to stay positive and if you have any questions I am very happy to answer them.

Good Luck

• I had a 3cm tumour early last year which fortunately was operable and hadn’t spread. After the four rounds of chemo treatment (before op), which was one day every other week, the scan showed it had reduced in size so much that it was barely visible which was great news.  Fingers crossed that it will reduce your tumour considerably too! Good luck  

Mine was FLOT chemo by the way 

thanks for your reply much appreciated

Hi Nev

I'm so sorry that you are going through this. My tumour was stage 3 with cancer in 1 lymph node.

I'm having FLOT. Are your doctors considering immunotherapy? They'd have to check the genetic markers to see if it would respond.

I'd also suggest looking at the research medical trials on cancer research website and ask your oncologist about these too.

I've met a lovely group of people living with oesophageal cancer on the smartpatients.com website. Some have been living with stage 4 cancer for few years.  They meet via zoom twice a week. They have so much experience between them and it's a good group.

I would recommend bring proactive and chasing the start of chemo. They will need to do blood tests and various swab tests before you begin. So it will be great to have the appointments all booked in.

I've been reading the 'Nature cancer' digest of the latest advances in cancer treatment research that are on the horizon including the adaptations they are making to the covid vaccination technologies to treat cancer.  For myself this gives me hope and the feeling that we just need to hang in there until the technologies advance.

I'm sure your head is spinning with this devastating news you are trying to process. Sending you lots of positive vibes.

Take care,

Suzy

Thanks browndog good to hear . Did you have any side effects ? . 

Thanks Suzy - Ive just found out im seeing my Oncologist on Monday , so lets see how that goes. Thanks for the info about smartpatients ..Good to know im not alone 

Best of luck for Monday. I'd suggest taking a notebook with questions  - seems obvious I know but I really needed someone to point this out to me. You really are not alone!