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checking in and update on Dad

Forums General Melanoma Community checking in and update on Dad

  • Post
    snow white
    Participant

      Hello my friends.  

      I wanted to let you know the latest with my Dad.  Its been a bit of a roller coaster ride for sure.  BUT, as of this moment ALL of his scans are CLEAN!!!!  His doctor is absolutely amazed at the response he has had to opdivo/ipi.  His liver numbers have been on a roller coaster ride, but we think we finally have it under control.  Dad went for his MRI a few weeks ago and the doc said it was "as clean as a whistle", words that you want to hear from your Neuro.  They took him off of anti-seizure meds and steroids, oddly enough he had a small seizure about 3 days later and had to go to ER.  So he is back on the seizure meds and a very small does of steroids.  He had his first Keytruda infusion about 9 days ago, so far so good.  He is not feeling that "well' since the seizure, but we attribute it to the meds.

      So as of this moment he is NED.  Its shocking to be able to say that, and I know that could change quickly, but for now I am so grateful.  His doc at the Angeles clinic is an absolute doll, we love her so much.

      To be honest, I have held off posting this because I am still scared.  I am not superstitious, but I am almost afraid to say it out loud, i don't know if that makes sense.

      Anyway, I am still reading the board often, I am so sorry that there are so many new members:(

      Thinking of you all especially: Josh, Deb, Jenn, Niki, Celeste, Adrianna & Rob, Ed, and a few others I am sure I have missed.

      xo Jen

    Viewing 11 reply threads
    • Replies
        miaka618
        Participant
          Awesome! Hopefully the NED sticks like super glue!
          jenny22
          Participant

            Congratutaolons on such wonderful news Jen…..

            May it last forever.

              snow white
              Participant

                Thank you!  We are hopeful!

              Patrisa
              Participant

                Dear Jen, i am sooo happy for your dad and your entire family, brings so much hope to all warriors…. 

                Love,

                Patrisa

                  snow white
                  Participant

                    Thank you Patrisa!  I appreciate all of your support!

                  sister of patient
                  Participant

                    That is such great news – so pleased for your Dad and your family! May this last forever!!!!

                    Barb

                    jennunicorn
                    Participant
                      NED

                      That is great news Jen!! 

                        snow white
                        Participant

                          Thank you Jenn.  Have you seen or heard any news on Josh or Deb?  I have been worried.

                          jennunicorn
                          Participant
                            NED

                            Haven't seen anything, I think about them often, hope they are doing ok

                          zfishberg
                          Participant

                            So glad for your Dad and your family! 

                            You are doing such a great job with your posts for others who are fighting this terrible beast.

                            I would like to hope that one day may be I will be able to post a similar good post about my husband.

                              snow white
                              Participant

                                Thank you!  That is why I decided to post.  My Dad was in bad shape last year and has come such a long way.  He had 15 brain tumors, over 20 in his spleen, 1 on the lung, 1 in lower bowel and 1 on upper thigh.  There is hope!!!

                              Cindyco
                              Participant

                                So happy for your and your family Jen!  I remember that you have Dr. Morganna Freeman at Angeles.  I saw her speak at the Angeles Clinic Melanoma Symposium a couple of weeks ago and she seemed amazing (we have Dr. Hamid, who we love too)!

                                  snow white
                                  Participant

                                    Thank you!  How is your Mom?  We love Dr. Freeman and Dr. Hamid.  Hamid follows Dad as well and see's him on occasion.  The Angeles Clinic is just so AWESOME, so happy we found it!

                                    Cindyco
                                    Participant

                                      She's doing well right now even though we are waiting to start the IMCGP100 trial!  The Angeles Clinic is really much more approachable and hands on with their patients, and we are also so happy that we are there now as well!  We just took a trip to MD Anderson (per Dr. Ribas at UCLA's suggestion) to see what trials are available there as a backup (really interesting studies about microbiomes), and I'll start a separate post about that visit when I get a chance in case anyone finds that information useful.  Your dad's story is really inspiring and I really hope that we find something that is going to work for my mom too.

                                    Polymath
                                    Participant

                                      Hi Jen,

                                      Wonderful news, we are so happy for your family.  I'm in the reluctant to post mode as well so I understand.  I pinch myself everyday, wondering how I can feel this great, in my 5th year at Stage IV and off all meds.  There really is hope in the new immunotherapies.  Woo hoo!

                                      Gary

                                      maperny
                                      Participant

                                        Happy to read your news,  Long may this continue!  Never stop posting, your encouragement helps many.

                                        Maria

                                        Bubbles
                                        Participant

                                          That is wonderful news, Jen!!  Thanks for sharing.  Hang in there.  Hopefully your dad's seizure management and effects of the events and the meds will continue to improve rapidly!   yours, c

                                          cancersnewnormal
                                          Participant

                                            Ahhhh! I'm so happy to hear this! "Clean as a whistle!" BOOYAH! I've never been off of Keppra, and likely never will be. Too much radiation. **cheesy happy to be here grin** Hopefully the not feeling well is the steroids… although I do have a fellow melahomie in Pasadena area who didn't do well with Keppra and had to change anti-seizure meds until he found something that was a better fit for his system. 

                                            Had to chuckle a bit with you not wanting to say anything out loud….. My hubs is always telling me "Stop saying things like that! Don't even joke about it, because what you say seems to come true!" Ha! The good news is that your dad is doing well. The bad news is that it starts the next level of stress in staying well. ; ) When things are going bad, you just really really want them to swing in your favor. When they finally do, you start the fear circle of losing that positive motion. Why do we do that as humans? Are we just wired to wig out? On a positive note, it means your perfectly normal…. oooooor… I'm perfectly weird too. Hmmmmm. : )

                                            WithinMySkin
                                            Participant

                                              Such amazing news!! Your father has had such a tough journey – it makes the good times that much sweeter 🙂 Hoping this is his exit off the roller coaster!! 

                                              Lauren

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