Loading...

fiona2020's Recent CancerCompass Activity

  • Fiona2020 has created a new message board discussion

    Does anyone know of institutions performing "Metronomic therapy"? The introduction of the maximum tolerated dose in usual treatment protocols made necessary the imposition of rest periods between cycles of therapy—a practice that not only involves re-growth of tumour cells, but also growth of selected clones resistant to the therapy. Hence, the therapeutic success obtained during the first cycles of treatment ...

    February 16 at 4:08 PM view discussion
    • Fiona2020 has replied to a post on the message board

      Does this sounds like an advertisement? Although run by Cancer Treatment Centers of America (CTCA), this site is where legitimate patients and devoted caregivers seek advice and comradery.

      January 12 at 3:50 PM view post
      • Fiona2020 has replied to a post on the message board

        Dear ALL Urachal Adenocarcinoma contributors, I've so appreciated your informative posts. I had appropriate UA surgery Oct 2017 w clear nodes/margins and no mets, but was not offered prophylactic chemo. Lung mets Aug 2019 and start G-FLP this Monday at MDAnderson. Now for the questions: What are your thoughts about your treatment and results? Do you think post op prophylactic chemo would have m...

        January 07 at 10:04 PM view post
        • Fiona2020 has replied to a post on the message board

          your post is a helpful relief to interact with a real and similar patient. thanks for being so kind as to share. Am i understanding correctly you had the surgery Jan 2019 but NO mets until Dec 2019?  i had same sx (Oct 2017) as you but open abd (no nodes and clear margins no mets) but was NOT offered chemo post surgery, then develped lung mets 2y post op (Aug 2019). I am so relieved to...

          January 07 at 6:40 PM view post
          • Fiona2020 has replied to a post on the message board

            All Urachal CA survivors soon I start cycles of 5 day 5FU/leuko, cisplatin and gembcitabine (2 w off, repeat) at MDA for lung mets 2y after initial surgical removal. What can i expect as side effects? How can i best prepare? What has been outcome? Thank you

            January 02 at 4:20 AM view post
            • Fiona2020 has replied to a post on the message board

              I have lung mets from UC and will start w Dr Seifker mid January on 5 days 5FU/leukovorin, Cisplatin and Gemcitabine w 2 weeks off. What chemo regime did you all experience and what were side effects/results? Can anyone w this reigme provide insight? Hope you are not on site because Mark is cancer free

              December 22 at 5:23 PM view post
              • Fiona2020 has replied to a post on the message board

                thanks for reply! A blessing to chat w real persons experiencing strong chemo. MD Anderson RN told me side effects are well controled and i should expect fatigue the week following chemo, a week of fairly normal health then back for next 5 days of 5FU, Cisplatin and Gemcitabine...was she was lying? Really, what i should expect what? Be exhausted, nauseated, depressed, mouth sores, what else? for the full 2 wee...

                December 22 at 5:04 PM view post
                • Fiona2020 has replied to a post on the message board

                  ours is a nasty cancer. What treatment have you done? I was fully healthy 60 yo when i had part cystectomy and en bloc removal of urachas / navel and nodes 2017 at MD Anderson.  2 y post op and without any symptoms, i now have terminal lung mets and am trying to decide if multiple rounds of chemo is worth it just to slow growth (combo gemcitabine, cicplatin, 5FU/Leucovorin). Can anyone tell...

                  December 19 at 1:27 PM view post
                  • Fiona2020 has replied to a post on the message board

                    I was fully healthy 60 yo when i had part cystectomy and en bloc removal of urachas / navel and nodes 2017 at MD Anderson Houston TX. All these tissues MUST be removed. After 3 mo at home w lots of abd swelling / pain and gi discomfort i could return to work desk. 6 mo after i had near normal energy thanks to husband's care :-). now, 2 y post op i have terminal lung mets and am try...

                    December 19 at 1:12 PM view post
                    • Fiona2020 has replied to a post on the message board

                      Praise God for your remission!! Hope you celebrate Orignal cancer was rare, urachal adenocarcinoma. Chemo is combo 5FU and Leucovorin, Gemcitabine and Cisplatin 5 days every 3 weeks which might reduce tumors but is not curative. Seems the treatment could go multiple rounds if i tolerate, but i dont' know what that means in real life If anyone has been on this combo pls share your experience. What questions i s...

                      December 19 at 12:58 PM view post
                      Loading...
                      Load more activity
                      Loading more activity

                      About fiona2020

                      Bladder Cancer, Lung Cancer - Adenocarcinoma
                      Side Effects, Chemotherapy, Cancer Nutrition, Supplements

                      In Oct 2017 I was healthy 60 yo when diagnosed with Urachal Cancer for which I had partial cystectomy and en bloc removal of urachas / navel and nodes at MD Anderson Houston TX (MDA). Despite clear follow ups through
                      Aug 2019, I am now with multiple lung mets. We start up to 6 rounds of combo gemcitabine, 5FU/Leucovorin and cisplatin, (5 days tx w 2 weeks off) at MDA early 2020.

                      Why was no prophylactic chemo offered at surgery? Why are chest CTs not standard follow up (instead of only Chest XR)? MDA Surgeon and oncologist said clear margins/nodes indicate best prognosis but others on this site with similar surgery also developed mets. How can we advocate to avoid mets? Since there will never be large numbers or interest in our cancer, how can we advocate for translation of findings from cancers similar to our rare UC, into our treatment?

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.