adenocarcinoma with large cell neuroendocrine GOJ

Got Diagnosed with the above back in January, only found out after an endoscopy due to having very loud burps, more like a lion roaring. Started chemo within 3 weeks. I have had 3 rounds of chemo and feeling good, no side effects really except the usual fatigue. Round 4 was stopped due to my white blood cell count been too low, had to have a daily injection of filgrastim ( now that was not pleasant at all - aching bones was sick and had a bit of a runny tum for a day). Should be starting round 4 this Thursday 1st May. Like most people on here I was very dismayed when my oncologist told me I had 'months not years left to live', not going to listen to him, though hearing that does play on your mind, and it still does to an extent. Everywhere I look on the web seems too point to surviving longer is a big possibility.

  • And to top it off, Was supposed to see my consultant tomorrow for the results from my CT scan back on the 12th April, except they haven't come back yet !!. So after having butterflies or nerves for the last two days waiting to find out if the tumour has shrunk, I'm convinced it has but would like to hear from a professional it has, I am back in limbo. Have requested my oncologist nurse calls me tomorrow , its just a report to them but massive for me as I can't wait another 2 -3 weeks to find out.

  • Oh no Brodiebear that's unfortunate that the results from your CT scan haven't come back yet. I really hope that the scan results will be good and that the tumour has shrunk. Have you heard back from the oncologist? Did the nurse ring you back? I really hope you won't have to wait any longer to find out. 

    Thank you for sharing your story with us. I am so glad that your chemotherapy treatment is going well and that you are not having any substantial side effects. It's a shame Round 4 was stopped but from what you mentioned, Round 4 was meant to start today so I hope it all went according to plan for you and that you are feeling ok today. 

    I hope you will hear from others here who have had a similar diagnosis and if you ever wanted to talk to one of our cancer nurses about anything, don't hesitate to give them a call on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm. 

    Best of luck with the rest of the treatment and fingers crossed for good results! Let us know what they have said about your CT scan results if you get a moment. 

    Lucie, Cancer Chat Moderator