MRF-Logo2019-Horizontal-RGB
Anyone have large tumor burden that is now NED
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Anyone have large tumor burden that is now NED

› Forums › General Melanoma Community › Anyone have large tumor burden that is now NED

  • Post
    • October 8, 2021 at 1:58 pm
    Christinad
    Participant
      My Oncologist said I’m responding well to immunotherapy but I look at my PET scan result and get discouraged because I have so many areas of tumor burden. I’m thankful the PET scan showed all areas are shrinking but wonder how realistic is that the immunotherapy will get rid of all of it. My Oncologist said he’s seen worse so I’m trying to stay optimistic. Hearing from someone else who had a similar situation who is NED even if it’s only one would be helpful.
    Viewing 7 reply threads
    • Replies
        • October 8, 2021 at 5:21 pm
        Johnjk04
        Participant
          Christinad, I know that you’re going through a tough time now. It will get better.

          Jan. 2012, I had melanoma in the brain, both lungs, liver, kidney, gall bladder, left adrenal gland and spinal cord.

          Two craniotomy, three Gamma Knife (brain) and the first clinical trial of ipilimumab and nivolumab did me well.

          I have been NED a for nine years now.

          Be patient, the immunotherapy takes it’s sweet time. Wishing you the absolute best.

          • October 8, 2021 at 5:36 pm
          Christinad
          Participant
            Thank you for sharing! Reading your response has me in tears and has given me hope! Congratulations on 9 years NED.
              • October 8, 2021 at 5:48 pm
              Christinad
              Participant
                <p style=”text-align: left;”>John, Can I ask how long it took before you became NED?  Since you were on the clinical trial quite some time ago I’m assuming your infusion schedule and dosing was different than mine. How long were you on the ipi/nivo? Did you start with the combo and finish with nivo for the rest of your treatment?</p>
              • October 8, 2021 at 10:12 pm
              Johnjk04
              Participant
                Christinad, I became NED, seven months into the trial.

                I received sixteen treatments of Ipi / Nivo over the course of two years.

                According to the trial’s protocol, I am not a full nor even partial responder. I had two brain tumors, six months into the trial.

                So keep your faith and hope. This immunotherapy is one helluva treatment.

                My trial was at Yale – New Haven (excellent, superb). I’ve moved to northern Arizona and the cancer care here is straight up lousy.

                Just glad that it’s my last set of scans and also last oncology visit.

                  • October 10, 2021 at 12:57 am
                  Christinad
                  Participant
                    What a great feeling it must be to have your last oncology visit and scans. Way to fight the fight! I’m very happy for you! Enjoy your success!
                  • October 10, 2021 at 4:44 am
                  Johnjk04
                  Participant
                    Christinad, yes it does feel nice. Had my brain MRI and CT scan last week. My oncologist is on a two month vacation (isn’t that crazy?). The office asked if I’d like to see a different oncologist, I told them I’d wait for two months (isn’t that crazy?).

                    Christinad, your last scan day and oncologist visit will come as well. Just carry faith, hope and patience along with your journey.  Dr. Allison and Dr. Honjo, both made brilliant discoveries in immunotherapy. Their are plenty of scientists working now to make even more advanced revelations.

                    May the peace of our Lord, Jesus Christ, keep you company. Christinad, you’ll be in my prayers !!

                      • October 10, 2021 at 9:56 am
                      Beany
                      Participant
                        Wow johnjk04, that is a wonderful outcome. Very happy for you. It  is inspiration for everyone.

                        Christinad、I had 13 tumors in mg liver, three in my lungs and one in my brain. Last two scans shows only a scar (most likely) in my brain. I think that is what Ed described as NEAD. Lung tumors shrunk quickly–about .195 mm per day but the brain tumor was slow.

                        Regards and best wishes,

                        Adam

                      • October 11, 2021 at 9:58 am
                      Johnjk04
                      Participant
                        Way to go Adam !!!
                        • October 25, 2021 at 7:43 am
                        ra23658
                        Participant
                          I am down to one small tumor in my lungs after having many in lungs, liver, pancreas and one in brain.  Started treatment about seven months ago Opdivo Yervoy 4 treatments every 4 weeks.  Now I’m on maintenance Opdivo every four weeks for how long I’m not sure.  I had initial tumor flare up and then they started shrinking.
                          • October 26, 2021 at 2:00 am
                          Christinad
                          Participant
                            Thank you all for your responses. I saw my oncologist today and told him I need help with anxiety and depression because I was feeling overwhelmed with all of this. Reading all of the posts gives makes me hopeful.  I have a lot to be thankful for and I need to remind myself of that.
                            • October 26, 2021 at 11:08 pm
                            Mark_DC
                            Participant
                              dear Christina,

                              I hope your response continues – I had very light tumour burden but pembro didnt work so I had very slow progression, but over one year more than doubling. Until TVEC came along.

                              So if you are responding then yes its possible that you can get to NED, many of this Board have been lucky enough to do so. If you are feeling down, then i would get treatment and help with this. I never did – it’s not the thing I would normally do – but I really would have considered it. I am not sure I became depressed – although I did find it hard to plan for a future life, and I did find pointless meetings bizarre (why am I attending these when I dont have long to live, can’t the other people see this is a waste of time?). Now I am better able to sit through pointless meetings – but not sure this is an improvement!!! 🙂 I think I did learn to value life, as you write that you do, so make the most of what we have and what we have been given. Also give to others.

                              My understanding is that you have good doctors and treatment, it can work and there are other options too. So I really hope you will do well. See someone to help you with what you are going through, plus I hope your scans will be promising too

                              take care Mark

                               

                                • October 26, 2021 at 11:18 pm
                                Christinad
                                Participant
                                  Thank you Mark! Like you I normally wouldn’t ask for help but I finally did. My Oncologist is very patient with me. He prescribed a medication to help and also referred me to a psychiatrist who specializes in oncology and only sees oncology patients. Hopefully this helps.
                                  I’m glad you’re able to sit through meetings now. That’s a step in the right direction 🙂
                            Viewing 7 reply threads
                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                            Popular Topics