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kathycaribe

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      kathycaribe
      Participant
        Cutaneous
        thanks everyone! i’m very encouraged!
        kathycaribe
        Participant
          Cutaneous
          i had a full body rash after ipi/nivo #1 but well managed w/zyrtec, benadryl, adn 30mg pred.  good luck!
          kathycaribe
          Participant
            Cutaneous
            ok bubbles, im encouraged for more than 4-5 months. 🙂 thanks so much!
            kathycaribe
            Participant
              Cutaneous
              If you do WBRT, look into (HA)hippocampal shielding and concomminnt use of memantine to decrease neurocog deficits. WBRT+HA+ secondardy met pass has good results compared to WBRT alone from my research. Not a lot out there if you have multiple mets tho
              kathycaribe
              Participant
                Cutaneous
                Thanks so much! That makes a lot of sense.
                kathycaribe
                Participant
                  Cutaneous
                  I would personally remove all dairy and processed foods but I’m sure that’s not very helpful. Walking is good. Drinking lots of water will move things along in the gut. No narcotics will keep peristalsis going. maybe increasing good gut bacteria (probiotics) but I seem to remember a study indicating weird (both positive and negative?) issues with probiotics and immunotherapy…
                  kathycaribe
                  Participant
                    Cutaneous
                    I can’t get into my company melanoma onc until end October but I actually have an appointment with MD Anderson at the end of this month with their melanoma person. They won’t do evistis with my state so I have to go in person. I suppose I could try to get in before next Friday with them and see what they say….
                    kathycaribe
                    Participant
                      Cutaneous
                      Thanks so much Celeste. I know I’m coming off half crazed 🙂 and it is probably because the team I thought was going to lead the way has been in stasis all week and I”m getting no input from the melanoma oncologist and my primary oncologist is breast cancer (but she is at my workplace, which makes GETTING immunotherapy incredibly easy – she comes in early so I can come straight from work (I work 12-hour overnight shifts)) and that’s what I’ll do Friday, the first day of immunotherapy.

                      My biggest issue is the amount of dex (I’m now on 10mg/day, which is over 67mg equivalent of prednisone, which seems to be what the studies base their OS numbers on) and I’m NRAS+.  I feel  I  don’t have targeted therapies.  I’m very concerned about giving myself my best shot at immunotherapy (ipi+nivo, and my onc wants to do the lesser amount) and to me that means going in LOW on dex, which has a long half-life so just tapering isn’t going to be enough IMO.  ANd as of today I have 7 days to taper from 10mg/dex day to 2-4 for my best shot.

                      Maybe I’m borrowing trouble. I don’t know. I’ve been having RUE issues this week and my onc wants me to get an emergent MRI tomorrow if the increase in dex doesn’t fix that but she did say she is absolutely committed to ipi+nivo starting next Friday. So I guess I’m going in on the low dose and hoping for the best and maybe I’ll be in the percentage that responds and all this will have been for naught. 🙂 I live for backup plans though so this is a huge lesson in patience I guess.

                      I’m also hoping the Mayo melanoma onc will have some input on Avastin and I can just emergently stop the dex and go on Avastin and open myself up to hemorrhage issues 🙂 but I’m getting an MRI brain Sunday (which is before I could start Avastin) so we’ll see what’s going on in the old noggin.

                      Thanks again for all your input!

                      kathycaribe
                      Participant
                        Cutaneous
                        I understand that Immunotherapy + brain SRS=good outcome, however, my oncologist totally dropped the ball and didn’t even start on immunotherapy approval until well after I completed the SRS so that ship has sailed. I am on way too much steroid right now, during spine radiation treatments, to start immunotherapy, so that ship is waiting to sail. Thus, the reason for my post. I want to start immunotherapy ASAP but 8-10mg of dex a day is not going to work with immunotherapy. So I TOTALLY and COMPLETELY am on board with immunotherapy. My holdup is the massive amount of dex I’m taking and figuring out how to drop that ASAP.

                        I found this study in your list https://jitc.biomedcentral.com/articles/10.1186/s40425-018-0371-5#Abs1 which concludes, “Dexamethasone blocks naïve T cell proliferation and differentiation by attenuating CD28 co-stimulation. Because co-stimulation is essential for successful T cell priming and expansion, these data suggest that corticosteroids impair response in immunotherapy treatment-naïve patients” which is my exact situation. “Steroid alternatives may need to be considered for patients with intracranial tumors who wish to enroll on immunotherapy trials. For example, blockade of vascular endothelial growth factor by bevacizumab reduces edema by normalizing tumor vasculature.”

                        I read the positive effect of ipi on dex suppression but the overall outcome is still decreased it appears.

                        Thanks so much

                        kathycaribe
                        Participant
                          Cutaneous
                          FWIW, my neuroonc is with a smaller organization, my onc is with a university-level and I have also established care at Mayo. I have requested input from the Mayo onc but have been waiting since Monday for a reply. Getting antsy.  🙂

                          Second question – I have established care with MD Anderson also (gotta love RN healthcare) and wondered if that was overkill; however, they have so many more clinical trials than Mayo and with BRAF-, NRAS+ I’m feeling like I don’t have a lot of options. Best hope is that I can tolerate ipi+nivo AND that it works. I’m fuzzy on prognosis but I keep seeing 4-5 months for brain mets and I’m neurologically intact other than pain, neuropathy, saddle anesthesia (continent though), fatigue after working a 12-hour shift, so I got that going for me. 🙂

                          kathycaribe
                          Participant
                            Cutaneous

                            weird – can't edit.  also, i have night sweats like crazy but also day sweats.  seem to wax and wane.  currently on an herbal menopause combination (Estroven).  also submandibular lymph nodes have been enlarged forever.  

                             

                            any correlation with melanoma with above?  should i stop the Estroven?  thanks!

                            kathycaribe
                            Participant
                              Cutaneous
                              I spent much of yesterday going through the AIM videos. THank you SO MUCH for those!!!!
                              kathycaribe
                              Participant
                                Cutaneous

                                HUGE information.  thank you SO MUCH.  i have a referral to a BC onc so i'll go with him for teh SNA and wait on teh CT. 

                                 

                                again, thanks SO MUCH!

                                kathycaribe
                                Participant
                                  Cutaneous

                                  HUGE information.  thank you SO MUCH.  i have a referral to a BC onc so i'll go with him for teh SNA and wait on teh CT. 

                                   

                                  again, thanks SO MUCH!

                                  kathycaribe
                                  Participant
                                    Cutaneous

                                    HUGE information.  thank you SO MUCH.  i have a referral to a BC onc so i'll go with him for teh SNA and wait on teh CT. 

                                     

                                    again, thanks SO MUCH!

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