We have been told 2/3 years left

Hi Larr03

if that’s all your father has been told then that’s not good enough. You definitely need to speak to your oncologist or someone senior on your cancer team. To be told bluntly that you only have 2/3 years left is also not very professional. I was diagnosed with stage 4 Oeasophageal cancer (midway) with metastasis into a lymph node and a bone in my spine. Because of the staging and the spread an operation was ruled out and I was placed on palliative care with chemo and radiotherapy. After 2 cycles of chemo I was able to eat as normal and at my 1st CT scan the tumour had shrunk a little.

After my 3rd cycle I was told I was eligible for immunotherapy, as I had a high level of PD-L1 (70%), so I continued with this and a further 3 cycles of chemo before going on to immunotherapy alone for 2 years. My tumour has continued to shrink further and I am hopeful this will continue to be the case. By the way I am 73 and was diagnosed last year.

Please, please don’t accept what you have been told so far, everyone is different and responses to chemo are not the same for all but you need much more information than your father has at the moment.

is there a MacMillan nurse you can speak with?

Good luck to your father.

if you have any questions please feel free to ask.

colin

Hi Colin

I'm new to this chat group, just scrolling through for positive news and read yours and I feel a little relief!

My dad has just finished his 6 rounds of chemo and now waiting for immunotherapy.

Hes 71 this year, recently retired, and I'm struggling with his diagnosis. 

Glad your treatment has kept things at bay. Can I ask do you have a stent?

Thanks 

Ali 

Hi Ali

No, I don’t have a stent but it was mentioned as an option at the beginning of my treatment if my swallowing grew any worse, fortunately the chemo reduced the tumour and my eating improved to the point I was eating normally again and this has continued. It is just over a year now since the chemotherapy. I also had a short course of radiotherapy in November last year.

Since then I am on immunotherapy alone (pembrolizumab) and so far so good, my last scan showed continued reduction in the tumour. I have another 13 months to go and fingers crossed things will continue to improve.

The only side effect from the chemo so far is the peripheral neuropathy (numbness and tingling in my hands and feet) especially during the cold weather. To combat this I wear woollen gloves whenever need, even to the point of wearing them in bed at night along with bed socks. 

The immunotherapy initially gave me a rash and itchy skin, for which I was prescribed some mentholated cream and some steroid cream along with anti histamine tablets. They helped a lot and over time the rash disappeared and the itching subsided to the point I have now more or less stopped using the creams.

I do hope your dad has a good response to the immunotherapy, I have found it much easier to tolerate than the chemo.

If I can help any further please don’t hesitate to keep in touch.

Hi Ali

Did your dad get tested for immunotherapy after his 6 rounds of chemo?

My husband has had 3 rounds of chemo so far but no immunotherapy, the consultant said he tested negative for it at the beginning of treatment, I wondered if that could change.

Thanks

Sorry for the delay in responding, dad has been having immunotherapy alongside his chemo, every 3rd go I think, he's now just had his first immunotherapy on its own as had 6 rounds of chemo.

Think he got tested after diagnosis but I know not everyone can have it.

Hope this helps x