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liz in Aust

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      liz in Aust
      Participant

        Thank you to everyone you replied, Its nice to have found this forum as I have felt very isolated for the past 4 plus years with this diesease.

        I just need to know that I have a plan and some options you you have given me…doctors sometime don't tell you too much.

        Hopefully the DTIC will help some and or the Ippiliumabab if I start that too.

        I don't know what other chemo drugs they can use here I was just unber the impression that DTIC was it… so thoses other ones may also be options.

        IL-2 looks promising I have not heard of it from doctos here and wonder if its something done in Aust?

        Thanks Liz

        liz in Aust
        Participant

          I Suzanne.. glad to hear that you are NED.

          What is the general routine of IL2 is it always and 18mth course of does it depend on the individual?

          Thanks

          Liz

          liz in Aust
          Participant

            Originally I had just had a baby and a  c section so every niggle I felt i just put it down to having a baby. My baby was 8 weeks old and I was in seveve pain with stomach cramps and the doc thought it was just a complcation from my C section and scheduled me for a quick surgery to fix a blood clot or so they thought. 7 hours of surgery later they removed 3 tennis ball sized tumors and parts of my small and large intestine….waking up from such a big surgery was a bit of a shock!! The tumors were in the mesentery of the bowel so thats the structure around the outside of the bowel. the cancer was not in the inside the bowel, they able to remove it all with clear margins.

            Recently I had been feeling a bit off in that I had dirrihorre 4 times a day which for me missing a few sections of bowel was not abnormal however it seemed to be everyday for quite a few weeks. I would also eat then feel sudden cramping and a have to go to the toilet, after which I would feel immediately better. I was also getting random stabbing ado pain which would last a few moments. One night I had eaten dinner and afterwards felt sick and bloated and very uncomfortable was due for a regular CT the following month, and because my doc just gives me the referral and I make the appointment when I'm due to see her, my husband rang the next day and we brought the CT forward. I thought I was just being my usual hypochondriac self coming up to my 6 month scan however I came back positive with 2 new tumors one behind my stomach and one in the bowel, with a whole heap of smaller nodes involved as well.  It had been 5 months since my last clear scan.

            Thanks for your thoughts I hope your husband is doing well

            Liz

            liz in Aust
            Participant

              Thanks Pat for the info  unfortuntly I am Ckit negative I forgot to mention that earlier.

              Hopefully something will work and I have to do a bit of research before I go back to the doc and bombard her with questions.

              Thanks Liz

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