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carien's Recent CancerCompass Activity

  • Carien has replied to a post on the message board

    Hi guys, Thanks for caring. I quit posting here some time ago in all honesty bc I saw the same questions and discussions reappearing again.... I am indeed not doing that well, I am hoping to receive a PARP inhibitor olaparib. No draining of the ascites yet, fortunanately, mentally as strong and resilient as before. Big hugs Carien

    May 05, 2015 view post
    • Carien has replied to a post on the message board

      Hi, so sorry things have taken this turn and you are now facing a difficult time ahead of you. I am sorry I cannot really offer any sensible thing to say, as my dad did accept the fact that there was only palliative care, and I am lucky that I have one specialist that is still with me even though he is now talking in terms of 'last straws'. Other drs have given up on me long time ago. I can only wish you strength an...

      February 01, 2015 view post
      • Carien has replied to a post on the message board

        Hiya Kathy, thank you for caring and asking about me :) I am ok, I sleep a lot at the moment bc of the morphine, waiting for meds to be shipped over from the USA to me. I am really curious to see if they will work. Sorry to hear about Chucks pain. Good that the radiation helped, but how is his situation now in terms of the cancer-activity ? big hug for you, Carien

        February 01, 2015 view post
        • Carien has replied to a post on the message board

          ps just for your info I am now on a combo of * regular painkiller (paracetamol 3g/day)* opiates (the morphine you have as well)* a painkiller esp. for the nerve-pain (lyrica, 75 mg)* an inflammation supressor (Arcoxia , 60 mg)  when my bakcpains were at its worst what helped me best was take hot showers, or sit in the bathtub and have someone rinse hot water over me.

          January 07, 2015 view post
          • Carien has replied to a post on the message board

            Dear Angel, So sorry to hear you are in such pain. Sometimes the pain can get a lot less with chemo if the chemo causes the tumor to back off from the nerves. (e.g. after . With my dad (who had PC as well) the pain was too much for the morphine to help him. He got a block. That helped him a lot. Did they talk to you about that as a possbility ? In my case, my tumor now presses on those nerves too but the morphine...

            January 07, 2015 view post
            • Carien has replied to a post on the message board

              I posted several times on this forum about this. in short: yes I have. dendritic celltherapy icw newcastle disease virus. you can read more by browsing my earlier posts. Carien

              January 06, 2015 view post
              • Carien has replied to a post on the message board

                Good luck Angel ! Keep us posted. Kathy I am so sorry to hear about Chuck! I really hope he will feel better and you two can have a lovely new years eve together.I had bad news yesterday, though I had seen it coming. New met on the liver, and probably some in the abdomen area as well. Fluid had accumulated there. Tumor on pancreas now growing into the back so into nervous system. Am on a cocktail of painmeds sin...

                December 31, 2014 view post
                • Carien has replied to a post on the message board

                  was this remark : "As for a palliative care doctor, UCSF should be able to provide you with a reference to one -- or perhaps a pain management specialist should be considered."  directed at me Hussy ?  I guess not, since I was just responding to BJ's question for help. I am not looking for advice on any pain management for myself, doing just fine, thank you. 

                  December 30, 2014 view post
                  • Carien has replied to a post on the message board

                    Hi bjhope, I had the most awful abdominal pains while on folfirinox, caused by the irinotecan component of the chemo. But this goes hand in hand with severe diarrhea. Does he have that ? The Pain can also be a result of the cancer itself, e.g. when blocking bile ( in which case a stent may help) or 'just' because the food doesnt pass the stomach properly, which I have. In that case the pain is at its worst about 1/...

                    December 27, 2014 view post
                    • Carien has replied to a post on the message board

                      my condolances Misty, Carien

                      December 25, 2014 view post
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                      About carien

                      Patient, Caregiver
                      Pancreatic Cancer
                      Alternative Treatments, Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Diet, Genetics, Lifestyle, Radiation, Recipes, Side Effects, Surgery

                      I was diagnosed Feb 14 2013, (age 45) with locally advanced PC (adenocarcinoma). Tumor 7cm (on the pancreasbody, surrounding portal vein & artery) More dead than alive at that time. I received folfirinox & radiation in 2013. And did (& still do) ayurvedic medicine. I seemed to be healing when tumormarkers rose suddenly and a met on the liver was found in April 2014. In hindsight it was there from May 2013.
                      I stay very positive. I have a blog: www.careensblog.wordpress.com
                      I have also been a caregiver for PC in 2012/2013 when my father was sick and died from it.

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