Results of PET/CT scan not good

The results of my scan, i am affraid are not good it has shown up hot spots as they call them which did not show on the previous scan.

My doctor has advised i start chemo next week on Gencitabine.

I asked about any trials that i might be able to take part in but he did not suggest any. I am wondering if gemcitabine is the best opption or if Fulfirinox or Gemzar would be better, I know nothing about these alternatives and i did'nt ask the right questions. I am devistated and don't know were to turn can anyone give me some guidance.

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  • Hi Kenny, im very sorry to hear about your scan results. I can only go by my dads experience on Gencitabine which have been very positive so far. He is 61 and has his tumor on the head of his pancreas and inoperable due to being wrapped around an artery. His cycle was 3 weeks on and 1 week off, half hour infusion each treatment. It has worked so well that that the oncologist have taken him off it at 4 cycles (was suppose to be 6 cycles) due to the tumor markers going down really well and his general well being well improved from pre-chemo ( 2 stone weight gain from the 3 stone he lost so far and good energy) He tolerated it very well, with manageable side effects of tiredness. He is off chemo 2 months now and seems to be doing very well so far (sometimes he says he feels that nothing is wrong with him as he feels so good some days), We are waiting for his first scan on the 16th April, which will be the true outcome of this treatment, dare i say that we are feeling positive! I have heard that Fulfirinox is quite a harsh treatment although it does seem to get good results in some people. Not sure if this helps you any, but i wish you the all the best with your treatment...Rachel

  • Thank you rachelqt it is good news that your dad is responding to Gencitabine and yes this does help it gives me hope that it can be just as positive for myself.

    Hope everything keeps going positive for your dad and i will keep you updated.

    Many thanks for reply it does make a difference when you can talk to others that are going through the same thing.

  • Hi Kenny, so sorry to hear the news , this bloody cancer !! . I have inoperable PC also , I have just finished my first cycle of Gemcitabine , i have had 9 sessions 3 on 1 off , i have 2 weeks off now and start again after easter , then a scan , i always dread the visit after scans but try to stay positive . I have'nt been too bad on it , headache and severe tiredness for a couple of days then start picking up again , my weight is stable and i eat when i want and what i fancy , been lucky not had much sickness with it and no hair loss . keep us poted Love Cath x x

  • Hi Kenny, Just want to wish you luck with your treatment

    christine x

  • If your GP did not suggest any trials then perhaps you will need to research for yourself. It's not easy especially for those feeling so unwell and neither are the decisions easy so if you have someone to help it will share the load for you. Speed is of the essence.

    Once you start one chemotherapy treatment it often excludes you from inclusion in a trial so that is worth thinking about.

    Here are two links to information about trials:

    cancerhelp.cancerresearchuk...

    pancreaticcancer.org.uk/inf...

    You might want to look at details of the specialist centres - vital they know what they are doing in my opinion:

    pancreaticcancer.org.uk/inf...

    You may want to contact some specialists direct - good to know people in the know. Just because some trials have closed and completed does not mean to say the same treatment cannot be given especially if the results are good but not yet published.

    All these were prepared to help my husband but unacceptable delays with oncologist refusing to refer for a second opinion thwarted all those. Not in any particular order and you can google them for contact details as the ones I have are out of date.

    Professor Angus Dalgleish - vaccines immune therapy - monoclonal antibodies

    David Cunningham, MD david.cunningham@rmh.nhs.uk

    Professor John Neoptolemos or David Smith, MD Ph: 44-151-706-4170 Royal Liverpool University Hospital

    Dr Gary Middleton

    Dr Crispin Hiley is a Research Fellow in Professor Nick Lemoine’s lab at Queen Mary University in London - he may be able to tell you about any treatment or possible trials using viruses to target the treatrment.

    I wish you well. xxx

  • Hi Kenny, I want to wish you the best of luck with your treatments, stay strong and God Bless you... xoxoxoxo WiscWife..

  • Thinking of you Kenny, keep strong. XX

  • My husband has been through 4 cycles of gemcitibine with few side effects. No nausea. No headaches. Some constipation. Less energy. More tired. He has Stage 4 inoperable PC. He continues to feel pretty good. Is now eating so well that he weighs more than he ever did before. But so what, right? His doctor has put off doing another scan until after cycle 6 of Gemcitibine since in our case the results don't really matter. Due to the diagnosis my husband does not want to go through chemo with severe side effects and the same for trials. He is 75 and although not nearly ready to die, does not want to experience the end of life being sick. So we just keep hoping the chemcitibine keeps doing it's job for as long as possible.

    Hope you have similar success with it.

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