Duodenal Cancer Newbee

I have just come out of hospital after an attempt to remove a Duodenal tumor. The surgeons couldn't remove it as it had spread to vital organs and veins. They said it was inoperable, so next I'm told it's chemo.

It's good to read of people just with positive mental attitude pushing through this....I am hopefully of the same attitude, I am not going to let this beat me. As I said in the title I'm a Newbee to all this, gas anyone got any pointers? How did you get over your first chemo??? Is it as bad as what I read? To be honest I don't know what I'm dealing with here it's been such a rollercoaster from the end of October,when my symptoms first started, till now. I didn't realise a cancer could be so agressive. 

Any advice is welcome, thank you for reading.

  • Hi Chip66,

    Sorry to hear of your diagnosis, it is a terrible shock isn't it.

    I was diagnosed with inoperable duodenal adenocarcinoma just over a year ago, I had six rounds of palliative chemotherapy, capecitabine tablets and oxalyplatin infusion, it wasn't easy, especially the infusions, the first was given over 2 hours, but I eventually settled on 4 hours which gave less severe immediate side effects. I have good support from my husband and we managed quite well, and I am currently 'stable disease ' with CT scans every three months to check for progression. If you take a look at my profile you'll see more details. 

    Whilst having chemo I found it best to report all side effects, and to take the tablets prescribed for side effects sooner rather than later. I used the help lines and called my liaison nurse whenever I had questions or any problems.

    For informal advice and general support the Macmillan forums have been great, although these particular pages are rather quiet as there aren't so many of us with duodenal tumours. 

    I hope this is helpful, please ask if there's anything I've not mentioned that you are wondering about. 

    Best wishes 

    Sarah 

  • Dear Chip 66

    Sorry to hear about your diagnosis. My husband was diagnosed in February 2018 and had a Whipple procedure during which his duodenum, gall bladder, half his pancreas and a third of his stomach was removed.  His recovery was tough and he lost 50 lbs during the diagnosis and treatment, and turned down precautionary chemo. He stayed clear of metastases until January 2019 when two tumours were found in his liver and abdominal lymph node. [Full details and timeline are in my profile].

    He had another six rounds of capecitabine tablets and oxalyplatin infusion chemotherapy in 2021, and is stable the moment.

    He is still working, although after effects of the Whipple slow him down a little, but like you he’s a positive person and it’s hard to reconcile the term ‘terminal cancer’ with him. We don’t know how long it will stay that way but we are making the most of every day but he gets a bit nervous when the three month scan rolls around. [Next one is February]

    Oncologists are pessimistic with this cancer as it’s rare and few case studies have been carried out so they tend to give the worst-case scenario. No one thought my husband would still be around four years on so there is no definite outcome, so wish you the best of luck in your treatment.

  • Thank you so much. I went to see my GP on Tuesday day asked the question if a DS1500 is applicable. The answer was yes, but I'm being optimistic, although the DS1500 is used when, I am of the understanding that life expectancy is under 6 months, but then I read it is purely there to expedite such process as PiP etc and can be valid for three years. Which really doesn't clarify matters. All I know is that I am determined to fight this. I have my first meeting with oncology on the 31st January this year, so hopefully I can get answers and be in better knowledge of just where I am at with this. But thank you for replying, you have given me a ray of hope. 

  • I would take what you can get, my consultant is still pessimistic about my outlook, but I'm feeling ok at the moment, I can't do my job though and fortunately for me my work have agreed to serious ill health retirement. In the short term this is great, but I'm hoping for a long term and am not sure what this will entail. I'd really flag up the incurables as a great source of comfort, information and general irreverent behaviour x

    Sarah 

  • Thank you Sal....well I was retired on ill health grounds three years ago after a breakdown after my wife was brutally murdered.  I was just on the cusp of getting my self sorted out,  when this happened. I'm sort of hoping I can pull through this, because there is so much I want to do. This is what is keeping me going! Like I have said before I am a big believer in Positive Mental Attitude.... That is my key, my main defense. I hope, I pray that we will ALL triumph in this long battle against this unseen killer. 

  • Oh Chip, I am so sorry to hear about your wife, I really don't know what else to say other than hugs and best wishes. 

    Sarah 

  • Dear Salis, thank you. Well I guess one consultation would be if I don't come through this and is my time, that I may be reunited with my wife on the other side, of you believe in that sort of thing.

  • Hi Chip66, 

    I'm glad that thought gives you comfort, but I hope that you will be with us for plenty of time yet.

    Best wishes 

    Sarah 

  • So sorry to hear about your wife Chip66 and what you are facing now. Salis is right - take whatever you are offered as it helps to manage your symptoms rather than just endure them. My husband has good contact with his oncology doctors and palliative care nurse who are always happy to talk things through and he is never told to 'put up with it'. He has problems with neuropathy from the chemo that affect his hands and feet - he says it's like permanently walking on a piece of rope' then there are the night cramps, occasional whipple attacks, [adrenaline rushes and gastric dumps which are very unpleasant]. Take the anti nausea tablets before you feel sick - they work better [at least they do for him] Good luck with the chemotherapy and keep us updated. As others here confirm this group is very quiet and all information is useful.

  • Thank you Sal x