Inoperable pancreatic cancer

FormerMember
FormerMember
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I’m new to this group. I was diagnosed with pancreatic cancer cancer last July. It’s inoperable due to major blood vessel involvement but the cancer had not spread outside the pancreas which is good. I’ve had 11 cycles of Folfirinox, although the last few have had the Irinotcecan removed due to severe diarrhoea (I even had diarrhoea in my sleep!). A scan after 6 chemos showed a slight reduction in the tumour and I have another scan on Tuesday. I hope for a further reduction but will settle for no growth or spread. I missed one chemo as I had bad chest pains I but an echocardiogram showed my heart was ok so I went back on treatment. I have very little pain, I take 10mg Oxycodone twice a day and 50mg Pregabalin which seems too keep it under control.

The chemo has been pretty brutal. Fatigue, lack of appetite, dizziness and diarrhoea are my worst side effects. Since the Irinotecan was removed the diarrhoea and dizziness are much better but I still have it every day, just reduced from 12-15 times a day to 3-4. Loperamide doesn’t work. I have learned to live with it.

I am a positive person and some days I think maybe I can beat ‘the beast’ as I call it but I know the odds are stacked against me.  Is there anyone out there with a positive story of inoperable pancreatic cancer?

  • Hi

    I'm sorry to read that your cancer is inoperable because of it's position and that you've had a rough time with the chemo.

    I had a different type of cancer, so don't have the experience you're looking for, but I noticed that your post hadn't had any replies yet. By responding to you it will 'bump' it back to the top of the discussions list where it'll be more easily seen.

    While you're waiting for replies, if you haven't already, you could type 'inoperable' into the search bar at the top of the group page to see previous posts which have mentioned this.

    Wishing you all the best

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember in reply to latchbrook

    Thanks. I’m not touting fo sympathy I’m sure you’ll understand, just wondering about other people’s experiences of inoperable pc.

  • Hi

    I didn't think for one minute that you were touting for sympathy. My suggestion to use the group's search facility was so that you could connect with others who have an inoperable tumour.

    Take care

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • HI JeannieB

    I too was diagnosed with inoperable pancreatic cancer in August 2018. The surgeon who gave me the diagnosis told me stay positive and not give up.He also recommended I see an oncologist here in Perth WA. Feeling pretty down I saw the oncologist who confirmed that the cancer was inoperable (being too close to a major vein) BUT maybe with chemo it would shrink and become operable. So following that meeting began 6 months of Chemo (gemcitibine) followed by 6 weeks of combined radiation and chemo resulting in a shrinking of my cancer. Then we waited for 6 weeks to ensure the cancer had stopped growing then onto my Whipples at the end of June 2019.

    6 weeks later in my follow up with the surgeon he told me that he believed that he got all of the cancer but to make sure I needed to undergo another 6 months of Chemo  (YUK YUK YUK).

    Solaris cancer center also provided a counsellor which was great help when i was down let me whinge to someone other than family and friends. I had my last treatment in March 2020 with my minor problem of some gut pain that comes and goes at odd times but I am now working on that.

    My learnings  STAY POSITIVE and Don't give up. Having a strong wife with good family and friends helped me through. The chemo was the worst of it but you get through it

    Sending positive vibes and good wishes

  • FormerMember
    FormerMember

    Dear JeaniB

    I was diagnosed with inoperable PC in Feb 2016 and have had folfirinox and folfox chemo.  I have been generally well, continued to work and keep fit by cycling and walking until recently when I've had some issues with the stent in my bile duct.  I'm currently hoping this will stabilise so I can resume chemo.  Nobody expected me to be still here 5 years after diagnosis so please stay positive and dont give up! 

    Best wishes to you x 

  • That is awesome to hear!!! Thanks so much for inspiring me and giving me hope.  I was diagnosed with inoperable PC in June when they went in to do a Whipple's procedure and found that it had already spread to my liver.  I have completed Folfirinox chemo - it was tough going but the nurses were amazing and the supportive treatments were helpful  the oncologist is happy with how i have responded to chemotherapy and i am generally well, but i have been a bit freaked out wondering what come next and for how long.  I have 2 kids ages 16 and 18 and i am not ready to let them go

  • FormerMember
    FormerMember in reply to warriorP

    I have pancreatic tumor and liver tumors 

    I am doing chemo - 3 session on Wednesday 

    However I cannot cope with dying so soon How do you manage that fear

    best regards

    sanda

  • i have, my whole family has had,  our crying and break down moments.  when i first got the news bout it being incurable and was given months to a year to live, i spent the first few weeks at home crying and feeling very sorry for myself.  i allowed myself this space and time very deliberately.  My thought was that while my body was weak and healing, i would let my spirit also be weak and healing so that i would be be string mentally when my body was physically strong again.  i am still scared and anxious and upset, but i am trying to make the most of whatever time i do have, so i am exercising and trying to stay fit and healthy for as long as i can.  None of us know what time we have in life - we just need to live it as best as we can

  • FormerMember
    FormerMember in reply to warriorP

    You are very brave, I am riddled with anxiety, yes I know we are not in control, still am so weak an need help

  • It is difficult. Hopefully with the chemo you will start to feel a bit stronger . For now, try to live for today, taking each day as it comes.  Notice the small things and enjoy them - like thesnowdrops and the daffodils coming up now and the new spring buds on the trees.  focus on qll the things you can do, not what you can't and celebrate any acheivements.  like being able to have a wash by yourself, unaided ( that was a big one for me after surgery), being able to sit up longer, walk further. set yourself smal  challenges and rejoice when you acheive them.  I think the trick is to live life like a child - they don't think about tomorrow or dying or the future - they just ARE. I am trying to do that too. Can't wait til lockdown eases and we can move about and see friends again