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input greatly appreciated
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input greatly appreciated

› Forums › General Melanoma Community › input greatly appreciated

  • Post
    • July 6, 2018 at 3:48 am
    happyfeet123
    Participant

      Hi Everyone:

      I went to MD Anderson recently for a second opinion and possibly having my treatment there.  Dr, Tawbi would like me to have a brain mri and an mri to my leg before coming up with a treatment plan.   My right leg is the primary tumor and the left leg is showing new metabolic energy in the last two pet scans,  My current oncologist stated she does not believe it is melanoma but agreed after further discussions to perform a fine needle biospy.  I wanted to have a second opionion first. MD Anderson did not find anything on the ultrasound and this is why I am having an mri to the leg.   He did say I could have my keytruda infusions where I live and have my pet scans and mri every 3 months at MD Anderson.  I am currently being treated at UCSF every 3 weeks.  It takes about 6 hours to travel to Houston from where I live by plane and 4 1/2 hours to UCSF by car.  I would not have access to a melanoma oncologist where I live.  It would be a oncologist who has treated patients for melanoma but that is not his speciality.  I am considering this treatment plan vs going to SF every 3 weeks.  I have some concerns about the oncologist at home not being a melanoma oncologist and asking for any input from the group.  I want to think this through and make a good decision.   Your thoughts would be greatly appreciated!

      Also, does anyone have any experience with Dr Tawbi or MD Anderson and willing to share their experiences.

       

      Thanks

      Happyfeet123

       

       

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    • Replies
        • July 6, 2018 at 4:39 pm
        MichelleRHG
        Participant
          I went to MD Anderson for a consult/treatment plan and am really glad I did. I started out having infusions and scans at home and traveling to MD Anderson for procedures, surgeries and plan updates. After 2 misinterpretations of scans here locally (which happened because these guys are NOT melanoma specialists), MD Anderson oncologist wanted me to get all scans there, every 3 months. So I fly there from Ky for everything except Opdivo infusions. I do that here in Ky. I am content with this plan! My onc at MD Anderson is not a warm or even kind person but is knowledgeable. I have had many procedures there including 2 invasive surgeries and I won’t go anywhere else if I can help it.
            • July 6, 2018 at 10:34 pm
            happyfeet123
            Participant

              Thanks for your input Michelle.  I am leaning toward MD Anderson because I think they are proactive and very knowledgeable.  Do you have any advice on how to navigate the system?   I am thinking that it is best to take the shuttle from the airport to a hotel that has a shuttle to md anderson and shuttle back to the airport.  I will plan meals around what is available on the shuttle or the md anderson cafe looked pretty appealing the last time I was there.  Any suggestions, especially on the financial end would be greatly appreciated.  Could I ask if you fly or drive from KY.  I am sorry to hear your physician isn't warm or kind, sometimes (most of the time) I think we all need that from our doctor.  

               

              Happyfeet123

              • July 7, 2018 at 12:20 am
              MichelleRHG
              Participant
                I’ve found the MDA experience extremely easy to navigate, even when I was a newbie 18 mos. ago. There is an online patient portal that tells you everything, including which elevator to take for your appt. They arrange your scans, doctor appts for you and are usually very efficient with it. If you want to make a change just call or email.You can email your doctors and their team members from the portal. All have been prompt with replies. You may not always hear from the doctor but their PAs, nurses might answer instead. I fly every time. It has eaten a hole in our savings but hey, that’s the way it goes! United has a deal with MDA that you can make changes to your itinerary without penalty if you book through MDA travel service. Very handy bc sometimes you don’t know what’s going to happen until you get there. By the 3rd trip we realized the Rotary House is our preferred hotel. It is connected by skywalk to MDA, is owned by MDA and run by Marriott. It’s the best thing about the trip. Awesome service,so convenient bc we can walk back and forth between appts if we want, great rooms. They sell out quickly. We usually Uber to and from airport. This is crazy but we LOVE the Apicus restaurant in the hotel. Lots of healthy options. We also eat at the 1st floor cafe at MDA near elevator C, I think its called Cafe Anderson? Its the one near the chapel. Ok I think I’ve given you more than you wanted. Top notch place! Good luck to you. If you make a separate post with MD Anderson in the title, asking for input, you might get more attention. Many people on this forum are patients there and will be happy to chime in.
              • July 18, 2018 at 5:32 am
              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. 

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