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The rollercoaster oesophagus cancer

asansum
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I posted here earlier, but things have got more complicated.

Had a CT scan confirmed cancer, advieed it was localised and, just as a precaution, sent for PET scan, but nothing new expected.

Had call from nurse confirming just a slight problem with a small hot spot on skeleton, but this wont be a problem. Going for chemo, surgery and chemo.

Got wworried about this 'small hot spot' called to speak to nurse for clarification. She was not working, but another nurse went through it with me. Now a different MDT has reviewed scan and seen extensive groth into lymph nodes, and a query about hot spot on spine.

Nothing has spread to other organs, but surgery is no longer contemlated, just referral to oncologist 13th Jan.

I have been down, very down, just off rock bottom, aand very sLightly raised, but now ddon't  know what to think.

  • Offline in reply to davek

    The doctor wrote in my notes

     

    Type: Adenocarcinomas 

    Stage 4

    Grade :poorly differentiated

    Extended to: lymph glands in upper thorax and glands surrounding tumour

    Spot of cancer sacrum

    Chemo: 6 to 8 cycles of ECX Herceptin testing.

    If that makes any sense.

  • Offline in reply to asansum

    I guess it confirms what you'd already been told - the mets are limited to glands and the spot on your lower spine that the nurse mentioned.

    ECX is similar to the EOX regime I was on - just one drug different. Epirubicin, cisplatin and capecitabine I had Oxaliplatine instead of Cisplatin - probably due to the different location (mine covers the junction of the Oesophagus and the stomach).

    I hope you prove positive in the Herceptin testing - I was negative which meant I couldn't have that treatment.

     

     

  • Offline in reply to davek

    What did your finalnparagraph mean about proving positive in tye Herceptin  testing?

  • Offline in reply to asansum

    Hi Tony,

    Sorry for the delayed response - I've not been online until now.

    Your second to last paragraph ended with "Herceptin testing" - which I took to mean you were being tested for the HER2 protein to see whether Herceptin is an option to supplement the chemo. From memory the results of this particular test take a few weeks longer to come through than the other biopsy tests done at the time of the endoscopy. 

    There's a good article about the use of Herceptin at www.cancerresearchuk.org/.../trastuzumab

    Cheers
    Dave

     

     

  • Offline in reply to davek

    Interesting article about Herceptin. Worrying aspects, but, when you are desperate and a trial like this presents itself, I'd  try it.

    Have spoken to my son and he was sronger than me.

    Spoken to my step daughter and we both went to pieces.

    Most difficult was to speak to my mother, who has her own rules to dealing with things like this, She says : no hugging, we don't do that in this family,and no crying, I'll  have plenty of time for that when you go home. Then goes on to say at least you've got time to plan, look at those poor people on the Malaysia airline. I'd  be really upset if I was on there, especially if I'd bought a return ticket.Thats her Irish logic.

  • Offline in reply to asansum
    Hi Tony, your mums response was interesting and made me smile. That generation can be quite stoic. Do you have a start date for treatment? Kathy
  • Offline in reply to KathyS

    I have signed the consent form ( unusually for me, I didn't even read the small print) they have promised it should happen quickly.

     

    Tony.

  • Offline in reply to asansum

    Tony,

    Your Mum sounds like a grand lady, with a practical approach. 

    Good to hear you've got the forms all signed and ready to go.

     

    All the best for 2015!
    Dave

     

  • Offline in reply to davek

    Dave,

    Sorry to probe, but what is your quality of life?

    Had a bad day, my step daughter came over, we walked 5 miles, came back and cuddled on sofa. Really good, but now she's  gone home, worried about, when chemo starts, will I ever do that again.

    Worried that, gradually the cancer will go somewhere else, if the chemo doesn't get me the cancer will.

    Have been prescribed with antidepressants,  worried that they will send me to fairy land, everyone else will know but me.

    At the meeting with the oncologist, my partner Sue was there, the consultant and a nurse, then another nurse came in, and I felt out of control. 4 against 1.

    I'm  rambling now,

  • Offline in reply to asansum

    Tony,

    Try not to worry about the chemo. I can guarantee that it will make you feel lousy for a while, but it will also give you a pretty good chance of getting the cancer under control and enjoying your life for longer. 

    I don't want to tempt fate but ...  I've been fine since I came off chemo in the first week of 2014. It took me about a month to recuperate and another two months until I was fully fit again. I don't mean shuffling around the shops fit, I mean climbing over mountains, walking miles and sailing fast dinghies fit. I still can't believe how lucky I have been - I just hope this lucky streak continues and that my February CT scan is as positive as my last one was.  

    I took ill-health retirement in late August partly because I was finding working full-time tiring (more with the stress of being an NHS manager with a shrinking budget, a pi**ed off workforce, and constant reorganisations than anything), and partly because I wanted to enjoy life while I had the chance. 

    Sailing is my passion and I spent most of the Summer sailing both near home, in North Wales on holiday, and off the South Coast (I was lucky enough to be able do an offshore sailing event for charity). I bought a new boat in September and the only reason I wasn't out in it today was I'm in the middle of a lousy cold and didn't fancy catching pneumonia as the rain was coming down almost horizontally! 

    I won't pretend the chemo was easy but I was lucky enough to be one of the people who had a better than average outcome at the end of it. That said I was pretty pig-headed, dog-walking and back in work within a few days of my infusions for the first four of my six cycles. My theory was that the fitter I could keep myself, the better my body would cope with the chemo. I was also pretty bored with sitting around and I needed something to stop me from fretting about whether or not the chemo was going to work. Being back at work certainly helped keep me distracted and the support of my colleagues was unexpectedly moving.   

    Anti-depressants will help take the edge off your anxiety and hopefully they'll help you sleep better than you would without them.

    Talking of sleep - I'd best try to get my head down now. I've never been a great sleeper, it's a waste of time me trying to sleep before about 1am - nothing to do with the cancer I've been like this since I was a teenager! 

     

    Cheers
    Dave 

     

     

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