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- July 18, 2018 at 5:32 am
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.
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- December 2, 2016 at 7:19 pm
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..
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- December 2, 2016 at 7:19 pm
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..
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- December 2, 2016 at 7:19 pm
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..
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- December 2, 2016 at 7:13 pm
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!
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- December 2, 2016 at 7:13 pm
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!
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- December 2, 2016 at 7:13 pm
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!
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- July 18, 2018 at 12:41 am
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?
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- July 18, 2018 at 12:18 am
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!
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- July 17, 2018 at 11:56 pm
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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