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Dad

  • Post
    snow white
    Participant

      I have some good news to report.  My Dad just had a Brain MRI today, the Doctors office called him a few hours later to tell him that he has NO new tumors and that the ones he had are all DEAD!!!!  SO HAPPY!!!

      Dad had his second IPI infusion on February 24th and he has experienced little side effects so far.  Mostly just fatigue and a very small amount of bowel issues the day after (and really flaky skin). I remain cautiously optimistic at this point.  Paul's death shook me pretty hard, it felt so close to home. All i know is this, I am confident that Dad will be here for my daughter wedding in September and that makes me so happy!  Prayers and plosive thoughts to all of you.

      xo Jen

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    • Replies
        jennunicorn
        Participant
          NED

          That is awesome news Jen! So happy for you and your dad!

            snow white
            Participant

              Thank you Jenn 🙂

              xo Jen

            Cindyco
            Participant

              So happy for you Jen!  We are seeing Dr. Hamid tomorrow at noon.  I have a feeling we will be offered the same trial Paul was offered, as the standard immunotherapies are not an option for us at this point.  Hoping we hear good news tomorrow too.

                snow white
                Participant

                  Thank you!  Please let us know how it goes with Dr. Hamid,

                  xo Jen

                Bubbles
                Participant

                  Glad you have some good news!!  Enjoy!!! c

                    snow white
                    Participant

                      Thank you Celeste!!!  I hope you are well.

                      xo Jen

                    maperny
                    Participant

                      Great news!  Must have ruled put LMD then?  I know thatcwas a worry for you.

                      Maria

                        maperny
                        Participant

                          Ruled out I meant!

                        BrianP
                        Participant

                          Great new Jen.  Happy for you guys.

                          Nicklindner
                          Participant

                            Great news!!  Congrats!!!

                            debwray
                            Participant

                              Brilliant news. My heart was in my mouth as I opened your post as it has been a tough journey so far. No doubt there will be more twists and turns..but I am sure that this outcome is down to your love and diligence seeking out the best options you can find for those you love so  very much and have had to guide and negotiate them to accepting these as the better options.

                              Job well done.. Enjoy it and hope the wedding goes with a swing. Got my bBuckinghsm Palace date for dtrs Gold Duke of Edinburgh award ..but ipi nivo not working for me so far… Currently in patient re pain relief and spinal investigations. Hoping against hope that I could be a late responder..but looks like will need a plan c..Hopefully seeing more of the picture today but am scared that time is running ever shorter and being an in patient is not at all good for the spirits ..unless achieving treatment or pain relief….but your news was a tonic…

                              Deb

                                snow white
                                Participant

                                  Oh Deb.  My heart just aches for you. I wish I dint live across the pond so that I could come visit you and try to lift your spirits.  I can only imagine being an inpatient as many times as you have must really wear on your nerves.  BIG CONGRATS on the Buckingham Palace Gold Duke of Edinburgh award. I hope you are getting some pain relief.  My Dad has been having back pain, but all scans show there is nothing to be concerned about.  I wonder if its because of resting (laying down) more than usual combined with the immunotherapy?  I am praying that you are a late responder and that you can get onto the next thing. quickly.  Please keep the faith, you are doing all that you can and you are still very much ALIVE!!!!  Your contribution on this board is priceless and so appreciated.  Sending you virtual hugs, best wishes and lots of prayers!!!  Keep in touch.

                                  xo Jen

                                  debwray
                                  Participant

                                    Thanks for the support. Got out on Friday..but not a lot of answers as yet.. They changed painkillers to look to nerve pasin but new regime will need tweaking.. But easier to achieve out of hospital… Onc has not fully ruled out more immunotherapy… But has kicked that to long grass of next scan result…which will either show benefit and we continue nivo only.. Or no benefit at ewhich point he will prob say stop as too many harms.. Not enough benefits. Suspect we may be treading that pathway but will only be sable to open the what next conversation when we arrive..

                                    Good thing.. Get to see Laura Marling on Sun night which should be good…Got to count my blessings.. Cancer does suck but it teaches me thre importance of all kinds of things..even down to the simple pleasure of going for a wee  in a normal toilet without having to be log rolled on to a bed pan…or how good it is to be home.. In my own bed  with hubby by my side… little things mean a lot..

                                    Will be the proud Mum for the awards..great to have things to look forward to..

                                    Really pleased things going well for you and yours… Hugs etc gratefully received.

                                    Deb

                                     

                                    X

                                    maperny
                                    Participant

                                      Thinking of you, Deb

                                    cancersnewnormal
                                    Participant

                                      My heart took a dive into my guts when I just saw "Dad" in the subject line. WHEW!!! That is FANTASTIC news!!! Thank you for sharing!  : )

                                        snow white
                                        Participant

                                          Awe. Sorry for the scare.  Thanks Niki, we are enjoying this good news.  I hope you are doing well.

                                          xo Jen

                                        Maria C
                                        Participant

                                          Thrilled to hear Jen!! I've followed your dad's story as I battled with brain mets and craniotomies all last summer. I've been clear for 6 months, my hair's mosly all grown back, and I'm back to work full-time. Miracles happen!! I'm thrilled for you, your dad & your family!

                                            snow white
                                            Participant

                                              Thank you Maria.  So happy to hear that you are well 🙂

                                            Casitas1
                                            Participant
                                              Wonderful!
                                              Terrified
                                              Participant

                                                So happy. Nice to see success stories.

                                                 

                                                Judy

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