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Stable Disease Question

Forums Stable Disease Question

  • Post
    THMoore
    Participant
      I have a question for all my warrior friends, I received my scan reports from MDA last night, here are the results as follows

      1. The 5 nodal tumors in my neck are displaying no cancer.
      2. The MRI shows 2 lesions in my brain but are not cancer.
      3. The CT continue to display 5 lung nodules. Not Cancerous.
      4. The 2.5 Centimeter tumor in my liver has stayed the same in size but is still active. (STABLE DISEASE)

      iIt’s been 4 months since my previous scans. The IPI/NIVO has been rough. I am deciding on if I should take the 4th dose of just move on with NIVO. MDA is leaving the decision to me. I am currently waiting for Colitis results.

      My question is, does Stable mean the immunotherapy is working,? MDA just explains, nothing has progressed, and the activity everywhere except my liver has totally disappeared. Basically my lungs and neck are good now. My liver still has a 7.0 pet scan uptake. Same as 4 months ago. So it’s still active. Previously I went from no tumors to a 2.5CM in 2 months. Now it’s been 4 months and it’s the same.

      I was wondering if you can share your thoughts based on your stories fighting this disease.

      Much Love
      Trent

    Viewing 2 reply threads
    • Replies
        Daisy2018
        Participant
          Hi Trent,
          It’s nice to hear you have some good news.
          This is the good article describing your question
          https://www.verywellhealth.com/definition-of-stable-disease-2249195
            THMoore
            Participant
              Thank you Miss Daisy. Excellent article. Hugs.
            A
            Participant
              Hello Trent,

              It seems that the combo is working. Your scan results are very encouraging. You should ask your doctor about the overall response for this scan. Stable disease in one lesion does not mean overall response “stable disease” if other lesions are no longer the issue. Likely you have partial response. Your doctor cannot push you to take the 4th combo, but if he advises you to take it, I would go for it and tolerate side effects instead of just continuing nivo alone, which was not given you much success in the past. The liver lesion may shrink/disappear with more cycles of treatment. If not, is it something what could be surgically removed? The choice is yours.

              Best of luck.

                THMoore
                Participant
                  Thx for the information. The Dr at MDA just said my disease was considered stable. He would not provide additional information other then let’s continue with immunotherapy. I asked about contingency plans and again, no information was provided other then let’s wait until early March scans.
                  Daisy2018
                  Participant
                    I would advise you to see a GI specialist for your colitis.
                    I noticed throughput my dads cancer treatment that disciplines are not coordinating their efforts to mitigate side effects. GI specialist can recommend ideas to deal with colitis besides steroids.
                    Daisy2018
                    Participant
                      I would also ask your doctor if he would add Leukine to your combo.
                      There were couple posts here people were saying they used it along with ipi/ nivo and side effects were much more manageable.
                      I m not sure yet if it’s just a trial thing or It’s an approved treatment. I wil ask my oncologist next time I see him.
                      THMoore
                      Participant
                        Thx Miss Daisy for the advice. I will surely ask the Dr about Leukine. As for Colitis, I am being tested for it this up coming week. They don’t think I have it, but I do. The scans also show inflammation in my colon. I think they are just looking at the final analysis of the scans and not reading the details.
                        Mark_DC
                        Participant
                          Hi Trent,

                          I think your news is good. If the other tumours used to exist and now do not that is an amazing sign. For the liver tumour, many of us on this board would take stable disease as a win. At least its no progression and as long as not spreading elsewhere then its great news. Looking back at my old scans, I was always stable disease but growing slighlty each time.- so maybe progression but slow progression. It was weird – not the miracle cure some of us get, nor the rapid progression others are unlucky to get. In between. I think many of us are like this.

                          As the others mention I think i woujld go for the fourth ipi/nivo if you can tolerate (i could not tolerate ipi). Continued stable disease may mean things are ok in the end, that its not really a tumour (I think, my onc said it might be necrotic and would have to biopsy), stable disease also buys you lots of time and then maybe a new treatment can help. Also response times vary – stable disease after four months may lead to reduction later, as celeste says be patient with the patient. I know its hard to be patient but thats what this disease teaches us.

                          Trent, like the others I think its good news. Hold in there and hope for good scans next time round
                          Best wishes Mark

                          THMoore
                          Participant
                            Thx Mark,
                            The nodules in my brain , and neck appeared in May. 5 in my neck were positive. Started NIVO and in August, only 2 were active but 5 nodules appeared in my lungs and 1 in my liver. Only the liver was active. Now, nothing has disappeared but only the liver is active. The Pet scan list the nodules as treated disease. Again leaving just the liver as active but haven’t grown since July. So all the nodules to include my neck never disappeared. They just no longer show cancer. I am hoping for the best and I am waiting to find out if I can take the last dose. It depends on if I have colitis or not. I am hoping it’s just inflammation. Thanks Mark. Trent
                            Mark_DC
                            Participant
                              I hope so too Trent. i have always had to have CT so then there is no active – it either exists or does not, i never did pet scans
                              Good luck Trent, just be ready for the long haul. That said, i think the news you have had is good. I hope you dont have colitis so can do one more ipi/nivo and then nivo. If there are problems then 3 ipi nivo can be enough
                              Hoping for good news
                              Besr wishes Mark
                              Mark_DC
                              Participant
                                I hope so too Trent. i have always had to have CT so then there is no active – it either exists or does not, i never did pet scans
                                Good luck Trent, just be ready for the long haul. That said, i think the news you have had is good. I hope you dont have colitis so can do one more ipi/nivo and then nivo. If there are problems then 3 ipi nivo can be enough
                                Hoping for good news
                                Besr wishes Mark
                              BrianP
                              Participant
                                Trent,
                                Congrats on the success of treatment so far. Just wanted to share my story in case it gives you a little hope. I participated in a Nivo-Ipi sequential trial from 2013 to 2015. I started out with about a 4 centimeter tumor and a 3 centimeter tumor. Both shrunk pretty quickly nearly 50% and have been stable ever since. In 2016 I had another recurrence of two more tumors close to the same size and participated in a ACT trial. Those tumor shrunk about 50% and have been stable ever since. It is possible to have a long term stability prognosis. I think most if not all of us go into our scans praying and hoping for that NED result and may even feel a little bit of disappointment with a stable result. One of the best lines I heard which really help me put it in perspective was, “In this game a tie is a win.” I got that from a pretty well know patient named T.J. Sharp. Best of luck with the upcoming treatments. Who is your Dr. at MDA. I’ve been a patient of Dr. Tawbi’s since 2016.
                                Brian
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