update

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    • #8450
      denne
      Participant

      I have been on this site since August of 2017 and am happy to say that I’m still here. Dx was 1B and a cure was hoped for for but 7 months later the cancer showed up in the lung. A regiment of Carboplatin had not worked for me. I started ifosomide in May and scan showed only a slowing in growth… 20 tumors were assaulting my lungs! I put my affairs in order and lived life big with my daughters and husband. Then suddenly the cancer responded to the treatment!! I have managed to tolerate Ifos every 3 weeks since June (and I think I’ve done a record amount of chemo and survived intact at least)
      The cancer is stable at this time and is difficult to see on the scan. Yay!
      So, I have finally seen Dr Birrer this past week in Birmingham. I am so glad that I went and now have a second opinion “support system”. He has suggested that i may start on avastin/cytoxin as avastin works in many ways like the Ifos and is far less toxic. I have no hope for cure but much hope for more time in this world.
      To any of you whose doctors feel that regular scans are not appropriate… they are wrong. Clearly, regular scans are appropriate for 2 years if you are hoping for a cure. This cancer got into my nodes even though it was a stage 1.
      I am still here, feeling pretty good, and want everyone to feel that there is a hope for tomorrow. And I feel good!! thanks, Linda Denne

    • #8458
      ann
      Participant

      Such good news, Linda!!! I am in year 2 and doing scans every 4 months. I want to catch this cancer early if it decides to make another appearance! Glad you got a second opinion. I, too, have seen Dr. Birrer. He is very encouraging!

      Enjoy yours days and so glad you are feeling good!!!!

      Ann

    • #8499
      denne
      Participant

      thanks Ann!!
      quick correction… it is the cytosine that works similarly to Ifos (not avastin).
      I just want to say that you have been very active on this site and it is appreciated! 🙂

    • #8501
      ann
      Participant

      It is important to me that we all stay as connected as possible! We learn from each other’s experiences! Being few in numbers, I think it is great to reach out and support one another! I want people battling this cancer to know there are people out here listening!!

      Thank you for sharing!!

      Ann

    • #8598
      Kathy
      Keymaster

      Linda, this is wonderful news! It’s so good to hear that the lung tumors have responded to the chemo! It’s so encouraging to hear that the meds are working. I’m also happy to hear that your visit with Dr. Birrer went well. It’s tough to travel for medical advice, but this disease is so difficult that it’s vital to put together an excellent care team for fresh perspective and more support.
      Thanks for sharing your updates and for reinforcing the importance of surveillance.
      All the best,
      Kathy

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