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jade1111

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      jade1111
      Participant

        Hello… trying this reply again.. the first one somehow the Kitten deleted. So my mom has been going to UCSF for 2 years, She seens Dr Adil Daud. He is wonderful. I really cant say or put into words how impressed I have been with the quality of care as well as the kindness at UCSF. The whole team is great. My mom was originally at Stanford and then came here and did a trial. UCSF is busy.. but they are very accomadating. Anyway.. just wanted to chime in on UCSF :0) 4.5 hours is a ways to drive… think good idea to go to Melanoma specialist.. husing a big Medical Center has its advantages. So many areas of specialty and support. Hope all goes well with your treatment. 

        jade1111
        Participant

          Sailing to Alaska. WOW.. Such a beatiful reminder of the jounrey.. and all those that support along the way! Sounds like an amazing trip!!

          jade1111
          Participant

            What a wonderful story!! Congratulations! 

            jade1111
            Participant

              Also wanted to add.. that I mentioned being disappointed with Stanford.. that is not a reflection on Dr Reddy. We were very impressed with him.. thoughtful and kind…it was Stanford itself and the follow-up with my Mom's stage 1 initial diagnosis.. wish we had advocated for full body pet scan…we also founf Stanford harder to naviage logisticaly in terms of getitng hold of people and call backs..

              jade1111
              Participant

                Also wanted to add.. that I mentioned being disappointed with Stanford.. that is not a reflection on Dr Reddy. We were very impressed with him.. thoughtful and kind…it was Stanford itself and the follow-up with my Mom's stage 1 initial diagnosis.. wish we had advocated for full body pet scan…we also founf Stanford harder to naviage logisticaly in terms of getitng hold of people and call backs..

                jade1111
                Participant

                  Also wanted to add.. that I mentioned being disappointed with Stanford.. that is not a reflection on Dr Reddy. We were very impressed with him.. thoughtful and kind…it was Stanford itself and the follow-up with my Mom's stage 1 initial diagnosis.. wish we had advocated for full body pet scan…we also founf Stanford harder to naviage logisticaly in terms of getitng hold of people and call backs..

                  jade1111
                  Participant

                    Hello.. So sorry you are dealing with this..

                    My mom is stage 4 and sees Dr Adil Daud at UCSF. She was at Stanford prior to UCSF which was also located closer. After much deliberation she decided to go with UCSF despite the distance. She is currently doing a trial there. My mom's intitial WLE was with Stanford and the saw Dr Reddy a few times after finsing out about reoccurence. Overall felt that UCSF had a bigiger department for Melanoma and we were dissapointed in Stanford's handling of her initial diagniosis in retrospect. Think its very important to see a couple of Drs and assess based on your situation. Once we figured out treatment.. standard of care versus trial.. we then has to decide on location. If my mom had decided on Standard of care (1 infusion) we may have had her do that with a local oncologist and consulted with Dr Daud.. there are a few options on how to go about once treatment is decided. 

                    I have to say that UCSF is super friendly and the staff amazing and all the patients I have talked with who see Dr Daud have nothing but great things to say. You will wait a while but Dr Daud continues to impress me with his ability to answer questions and be very present despite how busy they are. 

                    All the best to you and your husband!

                    jade1111
                    Participant

                      Hello.. So sorry you are dealing with this..

                      My mom is stage 4 and sees Dr Adil Daud at UCSF. She was at Stanford prior to UCSF which was also located closer. After much deliberation she decided to go with UCSF despite the distance. She is currently doing a trial there. My mom's intitial WLE was with Stanford and the saw Dr Reddy a few times after finsing out about reoccurence. Overall felt that UCSF had a bigiger department for Melanoma and we were dissapointed in Stanford's handling of her initial diagniosis in retrospect. Think its very important to see a couple of Drs and assess based on your situation. Once we figured out treatment.. standard of care versus trial.. we then has to decide on location. If my mom had decided on Standard of care (1 infusion) we may have had her do that with a local oncologist and consulted with Dr Daud.. there are a few options on how to go about once treatment is decided. 

                      I have to say that UCSF is super friendly and the staff amazing and all the patients I have talked with who see Dr Daud have nothing but great things to say. You will wait a while but Dr Daud continues to impress me with his ability to answer questions and be very present despite how busy they are. 

                      All the best to you and your husband!

                      jade1111
                      Participant

                        Hello.. So sorry you are dealing with this..

                        My mom is stage 4 and sees Dr Adil Daud at UCSF. She was at Stanford prior to UCSF which was also located closer. After much deliberation she decided to go with UCSF despite the distance. She is currently doing a trial there. My mom's intitial WLE was with Stanford and the saw Dr Reddy a few times after finsing out about reoccurence. Overall felt that UCSF had a bigiger department for Melanoma and we were dissapointed in Stanford's handling of her initial diagniosis in retrospect. Think its very important to see a couple of Drs and assess based on your situation. Once we figured out treatment.. standard of care versus trial.. we then has to decide on location. If my mom had decided on Standard of care (1 infusion) we may have had her do that with a local oncologist and consulted with Dr Daud.. there are a few options on how to go about once treatment is decided. 

                        I have to say that UCSF is super friendly and the staff amazing and all the patients I have talked with who see Dr Daud have nothing but great things to say. You will wait a while but Dr Daud continues to impress me with his ability to answer questions and be very present despite how busy they are. 

                        All the best to you and your husband!

                        jade1111
                        Participant

                          Thanks so much for this post!!!! So glad you made it threw and are sharing the light!

                          jade1111
                          Participant

                            Thanks so much for this post!!!! So glad you made it threw and are sharing the light!

                            jade1111
                            Participant

                              What a journey! Sounds like she has had very good care along the way. My Mom's was similar to your wife in that she had a melanoma on her thigh.. negative SNB.  Flash forward over a year later and only because she had a smart primary who saw swelling in right ankle and thoguht she may have a clot but saw HX of melanoma in leg so also ordred ultrsound of lymph in groin. Thats when they found it had spread.. she had no other symptoms..spent a lot of tiime advocating and finally got full body pet and was found in other areas. She decided to do a trial.. in order to qualify have to do brain MRI thats when they found the first set of mets. Overall we feel super fortunate.. she had done well on trial.. she was about to graduate so this is a little bump.. So glad your wife is doing well! Thanks for sharing story. We have found UCSF to be great. Any idea how long she will stay on Immunotherapy? 

                              jade1111
                              Participant

                                Thanks so much. I will try pushing for a PET scan prior to Gamma. That nakes sense about it in regards to necrosis. She has one scheduled for October and just did adbominal and chest CT.  My mom is at UCSF and she travels some for this location. Sounds like your wife is doing pretty well. She is lucky to have you for support. I really appreciate the input!

                                jade1111
                                Participant

                                  Thanks so much Anne. I was thinking the same thing regarding PD1. She is on Optivo. wonder if Keytruda would be better for Brain Mets. Hope your husbands gamma knife does the trick! Along with the keytruda. Thanks again!

                                  jade1111
                                  Participant

                                    Thanks for the input. This is very much my concern. That it is necrosis..Sorry your wife has been dealing with this. Can I ask how long between those MRIs? I was under the impression that PET is not a good evaluator of the brain? The second MRI they recently did required a special sequencing..actualluy causes a lot of confusion as had to rush over to a different location that had capabilities. The original Gamma Knife was 2 years ago.. first few MRI's post gamma were fine.. the problem one was the recent 2 year one which initially they thought was necrosis or related to Gamma.. now with special sequencing they I guess dont think so…Can I ask where you were before Angeles clinic? Thaks again!

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