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What to expect at md anderson?

Forums General Melanoma Community What to expect at md anderson?

  • Post
    arthurjedi007
    Participant

    I see Dr Adi Diab this Friday at md anderson. From what I read he seems like he should be an ok doc and has lots of experience at Msk.

    I was wondering if anyone knows what to expect there? I assume they'll have several systemic treatments in mind. I know they have the pd1 combo I almost started in Nashville and til of course plus who knows what else.

    Im also wondering what if anything they do for specific tumors that are at the crossroads of becoming somewhat critical? For example I found out last week I have a baseball size tumor in each kidney but the blood work shows my kidneys are ok for now. That's really the main reason I switched to go here instead of Nashville. I know others are worse off and it may be selfish but I would like to keep my kidneys while there is the chance to do so. Surgery, internal radiation, embolism, ablation, external radiation are some of the things I'm aware that could be done. Here in saint Louis they don't want to do anything because the kidneys are functioning fine for now.

    Also there's always the ever present need to keep an eye on my spine to make sure there's no narrowing of the spinal canal again. Also the keeping an eye on the 3cm ish tumor pressing on my brain.

    So I dunno. We'll be staying at their hotel although they are doing renovations. I'm also getting mentally prepared to just rent a place there to stay long term. I also chose mda over Msk because the winter should be more mild than ny assuming I'm still plugging along then. I hope so. I have a new Star Wars movie to watch in December. But thoughts of Jerry Ellis sure bring it home that this disease can get even the smartest and toughest.

    Artie

Viewing 35 reply threads
  • Replies
      jbronicki
      Participant

      Hi Artie,

      I'm so glad to hear you are getting a chance to come to MD Anderson.  I can't add much to the medical (as my husband is still in the wait and watch phase so my research tends to be general at this point) but I'm fascinated by the ACT research they are doing (Adoptive Cell Therapy).  I see that they have enrolled Stage 4 patients and Dr. Hwu is running the research: 

      http://www.mdanderson.org/education-and-research/departments-programs-and-labs/labs/til-laboratory/current-research/index.html

      We live here in Houston (about 10 miles south) and my husband has his next scans at MD Anderson on September 14th.  We've been up to the Melanoma center and we know our way around MD Anderson (it's huge! The medical center as a whole is pretty amazing to see)  He works right next to MD Anderson at the Baylor Genetics Lab and I work a few miles away at University of Houston so please let us know if you need anything at all, we'll gladly help in any way.  We can bring meals, movies, transportation etc.  or if you need recommendations on renting, etc.  We are big baseball fans as well. Please don't hesitate to ask us for help.  My email is jbronicki@uh.edu.

      Also, the weather right now is pretty nice, we just got through with our really hot days, and now the mornings aren't as humid.  They have an IMAX here right near MD Anderson so maybe you'll get to see the new Star Wars movie on the really big screen.

      Wishing you the best,

      Jackie

       

       

      jbronicki
      Participant

      Hi Artie,

      I'm so glad to hear you are getting a chance to come to MD Anderson.  I can't add much to the medical (as my husband is still in the wait and watch phase so my research tends to be general at this point) but I'm fascinated by the ACT research they are doing (Adoptive Cell Therapy).  I see that they have enrolled Stage 4 patients and Dr. Hwu is running the research: 

      http://www.mdanderson.org/education-and-research/departments-programs-and-labs/labs/til-laboratory/current-research/index.html

      We live here in Houston (about 10 miles south) and my husband has his next scans at MD Anderson on September 14th.  We've been up to the Melanoma center and we know our way around MD Anderson (it's huge! The medical center as a whole is pretty amazing to see)  He works right next to MD Anderson at the Baylor Genetics Lab and I work a few miles away at University of Houston so please let us know if you need anything at all, we'll gladly help in any way.  We can bring meals, movies, transportation etc.  or if you need recommendations on renting, etc.  We are big baseball fans as well. Please don't hesitate to ask us for help.  My email is jbronicki@uh.edu.

      Also, the weather right now is pretty nice, we just got through with our really hot days, and now the mornings aren't as humid.  They have an IMAX here right near MD Anderson so maybe you'll get to see the new Star Wars movie on the really big screen.

      Wishing you the best,

      Jackie

       

       

        tschmith
        Participant

        I wanted you to know you will be in my thoughts and prayers, Artie!  Good luck and please let us know how things are going.  We all care for you. Star Wars in December!!!!!  yah!

        Best Wishes!

        Terrie

        tschmith
        Participant

        I wanted you to know you will be in my thoughts and prayers, Artie!  Good luck and please let us know how things are going.  We all care for you. Star Wars in December!!!!!  yah!

        Best Wishes!

        Terrie

        tschmith
        Participant

        I wanted you to know you will be in my thoughts and prayers, Artie!  Good luck and please let us know how things are going.  We all care for you. Star Wars in December!!!!!  yah!

        Best Wishes!

        Terrie

      jbronicki
      Participant

      Hi Artie,

      I'm so glad to hear you are getting a chance to come to MD Anderson.  I can't add much to the medical (as my husband is still in the wait and watch phase so my research tends to be general at this point) but I'm fascinated by the ACT research they are doing (Adoptive Cell Therapy).  I see that they have enrolled Stage 4 patients and Dr. Hwu is running the research: 

      http://www.mdanderson.org/education-and-research/departments-programs-and-labs/labs/til-laboratory/current-research/index.html

      We live here in Houston (about 10 miles south) and my husband has his next scans at MD Anderson on September 14th.  We've been up to the Melanoma center and we know our way around MD Anderson (it's huge! The medical center as a whole is pretty amazing to see)  He works right next to MD Anderson at the Baylor Genetics Lab and I work a few miles away at University of Houston so please let us know if you need anything at all, we'll gladly help in any way.  We can bring meals, movies, transportation etc.  or if you need recommendations on renting, etc.  We are big baseball fans as well. Please don't hesitate to ask us for help.  My email is jbronicki@uh.edu.

      Also, the weather right now is pretty nice, we just got through with our really hot days, and now the mornings aren't as humid.  They have an IMAX here right near MD Anderson so maybe you'll get to see the new Star Wars movie on the really big screen.

      Wishing you the best,

      Jackie

       

       

      Scooby123
      Participant

      Good luck Artie , you and many others I look up too on this site. What you have been through and so strong , I am praying that soon you will feel so much better.

      scooby

      Scooby123
      Participant

      Good luck Artie , you and many others I look up too on this site. What you have been through and so strong , I am praying that soon you will feel so much better.

      scooby

        mrsaxde
        Participant

        I don't have any experience with MD Anderson, but I wanted to second Scooby's good wishes.

        mrsaxde
        Participant

        I don't have any experience with MD Anderson, but I wanted to second Scooby's good wishes.

        mrsaxde
        Participant

        I don't have any experience with MD Anderson, but I wanted to second Scooby's good wishes.

      Scooby123
      Participant

      Good luck Artie , you and many others I look up too on this site. What you have been through and so strong , I am praying that soon you will feel so much better.

      scooby

      BrianP
      Participant

      Good luck at Anderson Artie. 

      I'll keep you in my prayers.

      Brian

      BrianP
      Participant

      Good luck at Anderson Artie. 

      I'll keep you in my prayers.

      Brian

      BrianP
      Participant

      Good luck at Anderson Artie. 

      I'll keep you in my prayers.

      Brian

      AshleyS
      Participant

      Artie! This news makes me so happy! As another Mayo to MDA transplant, I hope you have as good of an experience as I have at MDA. To me, MDA is a much more positive place. My doctor hugs me and asks about my life. Their motto is, "You are a survivor as soon as you have a cancer diagnosis." The buildings aren't as nice as Mayo's. But, I love that there's a whole floor for Melanoma/skin cancer patients. 

      When I started at MDA, I met with my doc first. Then, she reviewed my case, presented me to the entire department, and they came up with options for me. She then gave me their recommendations, which I agreed with. Based on my scans and age, they decided to put me on the Opdivo/Yervoy trial; however, they also harvested a tumor for (perhaps) future TIL use.

      You will have a social worker. You do have to put them to work, they don't seek you out. However, they can help with air transportation and lodging. I live in the boonies, so there aren't any airline programs that work for me. Joeshouse.org has lots of housing info. Get on the Faith House sign up list. They seem to have a fair share of openings for semi-long term housing. 

      When we lived in TX this spring, we drove everywhere. Thank goodness for GPS! Using valet parking is only $3 more (plus a tip) than parking in a garage all day. When we flew in a couple weeks ago, we used Uber. Way cheaper and nicer than a cab. 

      Get the MDA app. It's helpful. You'll use the coded ("A"/"B"/"C") elevators for directions. Texans are super friendly and will always help if you get lost!

      The Rotary House is convenient and everyone is nice. We really like the attached restaurant, but it can be spendy. There are lots of delivery restaurants that are reasonable. There is a little area of fast food/cafes by the Waterfall. It's tricky to find, so ask for help. There's also a nice Italian restaurant, Treviso, in that building. 

      Hmmm…I don't know what else I can say! I'll be down in 2 1/2 months, so maybe we can meet in November!

      Good luck!

      Ashley

      AshleyS
      Participant

      Artie! This news makes me so happy! As another Mayo to MDA transplant, I hope you have as good of an experience as I have at MDA. To me, MDA is a much more positive place. My doctor hugs me and asks about my life. Their motto is, "You are a survivor as soon as you have a cancer diagnosis." The buildings aren't as nice as Mayo's. But, I love that there's a whole floor for Melanoma/skin cancer patients. 

      When I started at MDA, I met with my doc first. Then, she reviewed my case, presented me to the entire department, and they came up with options for me. She then gave me their recommendations, which I agreed with. Based on my scans and age, they decided to put me on the Opdivo/Yervoy trial; however, they also harvested a tumor for (perhaps) future TIL use.

      You will have a social worker. You do have to put them to work, they don't seek you out. However, they can help with air transportation and lodging. I live in the boonies, so there aren't any airline programs that work for me. Joeshouse.org has lots of housing info. Get on the Faith House sign up list. They seem to have a fair share of openings for semi-long term housing. 

      When we lived in TX this spring, we drove everywhere. Thank goodness for GPS! Using valet parking is only $3 more (plus a tip) than parking in a garage all day. When we flew in a couple weeks ago, we used Uber. Way cheaper and nicer than a cab. 

      Get the MDA app. It's helpful. You'll use the coded ("A"/"B"/"C") elevators for directions. Texans are super friendly and will always help if you get lost!

      The Rotary House is convenient and everyone is nice. We really like the attached restaurant, but it can be spendy. There are lots of delivery restaurants that are reasonable. There is a little area of fast food/cafes by the Waterfall. It's tricky to find, so ask for help. There's also a nice Italian restaurant, Treviso, in that building. 

      Hmmm…I don't know what else I can say! I'll be down in 2 1/2 months, so maybe we can meet in November!

      Good luck!

      Ashley

      AshleyS
      Participant

      Artie! This news makes me so happy! As another Mayo to MDA transplant, I hope you have as good of an experience as I have at MDA. To me, MDA is a much more positive place. My doctor hugs me and asks about my life. Their motto is, "You are a survivor as soon as you have a cancer diagnosis." The buildings aren't as nice as Mayo's. But, I love that there's a whole floor for Melanoma/skin cancer patients. 

      When I started at MDA, I met with my doc first. Then, she reviewed my case, presented me to the entire department, and they came up with options for me. She then gave me their recommendations, which I agreed with. Based on my scans and age, they decided to put me on the Opdivo/Yervoy trial; however, they also harvested a tumor for (perhaps) future TIL use.

      You will have a social worker. You do have to put them to work, they don't seek you out. However, they can help with air transportation and lodging. I live in the boonies, so there aren't any airline programs that work for me. Joeshouse.org has lots of housing info. Get on the Faith House sign up list. They seem to have a fair share of openings for semi-long term housing. 

      When we lived in TX this spring, we drove everywhere. Thank goodness for GPS! Using valet parking is only $3 more (plus a tip) than parking in a garage all day. When we flew in a couple weeks ago, we used Uber. Way cheaper and nicer than a cab. 

      Get the MDA app. It's helpful. You'll use the coded ("A"/"B"/"C") elevators for directions. Texans are super friendly and will always help if you get lost!

      The Rotary House is convenient and everyone is nice. We really like the attached restaurant, but it can be spendy. There are lots of delivery restaurants that are reasonable. There is a little area of fast food/cafes by the Waterfall. It's tricky to find, so ask for help. There's also a nice Italian restaurant, Treviso, in that building. 

      Hmmm…I don't know what else I can say! I'll be down in 2 1/2 months, so maybe we can meet in November!

      Good luck!

      Ashley

      Bubbles
      Participant

      Hang in there, Artie. Can't give you specifics on MD Anderson other than their great reputation. You are awesome and so are they! Sounds like a winning combo to me! Who's up for movie night in December? Looks like we are gonna have quite a crowd! Can't wait! Love you Artie! C

      Bubbles
      Participant

      Hang in there, Artie. Can't give you specifics on MD Anderson other than their great reputation. You are awesome and so are they! Sounds like a winning combo to me! Who's up for movie night in December? Looks like we are gonna have quite a crowd! Can't wait! Love you Artie! C

      Bubbles
      Participant

      Hang in there, Artie. Can't give you specifics on MD Anderson other than their great reputation. You are awesome and so are they! Sounds like a winning combo to me! Who's up for movie night in December? Looks like we are gonna have quite a crowd! Can't wait! Love you Artie! C

      stars
      Participant

      Hi Artie

      I have no idea what these mega hospitals are like, suffice to say that it's so impressive that you guys can access places like this. Cutting edge stuff. If a care pack from Australia would help, drop me a line. You can use your time to develop a taste for vegemite, and I could throw in the Mad Max trilogy for good measure.

      Stars

      stars
      Participant

      Hi Artie

      I have no idea what these mega hospitals are like, suffice to say that it's so impressive that you guys can access places like this. Cutting edge stuff. If a care pack from Australia would help, drop me a line. You can use your time to develop a taste for vegemite, and I could throw in the Mad Max trilogy for good measure.

      Stars

      stars
      Participant

      Hi Artie

      I have no idea what these mega hospitals are like, suffice to say that it's so impressive that you guys can access places like this. Cutting edge stuff. If a care pack from Australia would help, drop me a line. You can use your time to develop a taste for vegemite, and I could throw in the Mad Max trilogy for good measure.

      Stars

      Anonymous
      Inactive

      Hi Artie,

      I just came across your post looking for something else and wanted to share this link for you:

      http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/getting-here/lodging.html

      MDA has a few lodging resources that may be useful for you. Please don't hesitate to reach out if there's anything we can do.

      Sincerely,

      Shelby – MRF

      education@melanoma.org 

      Anonymous
      Inactive

      Hi Artie,

      I just came across your post looking for something else and wanted to share this link for you:

      http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/getting-here/lodging.html

      MDA has a few lodging resources that may be useful for you. Please don't hesitate to reach out if there's anything we can do.

      Sincerely,

      Shelby – MRF

      education@melanoma.org 

      Anonymous
      Inactive

      Hi Artie,

      I just came across your post looking for something else and wanted to share this link for you:

      http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/getting-here/lodging.html

      MDA has a few lodging resources that may be useful for you. Please don't hesitate to reach out if there's anything we can do.

      Sincerely,

      Shelby – MRF

      education@melanoma.org 

      arthurjedi007
      Participant

      Thank you everyone. It has put my mind more at ease the past couple days. I needed that. Some times I can get stressed pretty tight which is not good for me. I think I'm at peace now that they are the smart folks and they will fix me if they can. We shall see. Thank you for taking the time to comment.

      Artie

      arthurjedi007
      Participant

      Thank you everyone. It has put my mind more at ease the past couple days. I needed that. Some times I can get stressed pretty tight which is not good for me. I think I'm at peace now that they are the smart folks and they will fix me if they can. We shall see. Thank you for taking the time to comment.

      Artie

        casagrayson
        Participant

        Artie, I haven't been to MDA for melanoma, but for a brain tumor.  I have never felt so cared for in my whole life.  It is a well-oiled machine, and they care about you as a person, not just a lab rat.  🙂  I'm sure the experience will be a positive one, no matter what the outcome is.

         

        casagrayson
        Participant

        Artie, I haven't been to MDA for melanoma, but for a brain tumor.  I have never felt so cared for in my whole life.  It is a well-oiled machine, and they care about you as a person, not just a lab rat.  🙂  I'm sure the experience will be a positive one, no matter what the outcome is.

         

        casagrayson
        Participant

        Artie, I haven't been to MDA for melanoma, but for a brain tumor.  I have never felt so cared for in my whole life.  It is a well-oiled machine, and they care about you as a person, not just a lab rat.  🙂  I'm sure the experience will be a positive one, no matter what the outcome is.

         

        Wheels1994
        Participant

        That's great to hear, Artie.  I went down to MDA last September-January for 7 different appointments, surgeries, treatments, etc.  I can't say enough about the people there.  More than exceeded lofty expectations.  A well-oiled machine down there.  I had Dr. Hwu but met Dr. Diap a number of times when he was making rounds.  They do a team approach so your case will be discussed with all docs frequently in their meetings.  Going there put my mind at ease because I knew there was no better place to be.

         

        One recommendation- Stay at the Rotary House.  Make your reservations EARLY as in now.  It was sold out every single time on the date we arrived.  Make reservations and extend for multiple days after you expect to be discharged.  You can always cancel.  You just never know how long you'll be there.  Be in constant communication with the front desk and form a great relationship with them.  They are incredibly helpful and the few times we were in a crunch for reservations or extra days they called us immediately when something opened up.  Breakfast is excellent and they now have multiple food options.  We were there on average 6 days at a time and didn't feel the need to eat off site.

         

        Good news and good luck!

        Matt

        Wheels1994
        Participant

        That's great to hear, Artie.  I went down to MDA last September-January for 7 different appointments, surgeries, treatments, etc.  I can't say enough about the people there.  More than exceeded lofty expectations.  A well-oiled machine down there.  I had Dr. Hwu but met Dr. Diap a number of times when he was making rounds.  They do a team approach so your case will be discussed with all docs frequently in their meetings.  Going there put my mind at ease because I knew there was no better place to be.

         

        One recommendation- Stay at the Rotary House.  Make your reservations EARLY as in now.  It was sold out every single time on the date we arrived.  Make reservations and extend for multiple days after you expect to be discharged.  You can always cancel.  You just never know how long you'll be there.  Be in constant communication with the front desk and form a great relationship with them.  They are incredibly helpful and the few times we were in a crunch for reservations or extra days they called us immediately when something opened up.  Breakfast is excellent and they now have multiple food options.  We were there on average 6 days at a time and didn't feel the need to eat off site.

         

        Good news and good luck!

        Matt

        Wheels1994
        Participant

        That's great to hear, Artie.  I went down to MDA last September-January for 7 different appointments, surgeries, treatments, etc.  I can't say enough about the people there.  More than exceeded lofty expectations.  A well-oiled machine down there.  I had Dr. Hwu but met Dr. Diap a number of times when he was making rounds.  They do a team approach so your case will be discussed with all docs frequently in their meetings.  Going there put my mind at ease because I knew there was no better place to be.

         

        One recommendation- Stay at the Rotary House.  Make your reservations EARLY as in now.  It was sold out every single time on the date we arrived.  Make reservations and extend for multiple days after you expect to be discharged.  You can always cancel.  You just never know how long you'll be there.  Be in constant communication with the front desk and form a great relationship with them.  They are incredibly helpful and the few times we were in a crunch for reservations or extra days they called us immediately when something opened up.  Breakfast is excellent and they now have multiple food options.  We were there on average 6 days at a time and didn't feel the need to eat off site.

         

        Good news and good luck!

        Matt

      arthurjedi007
      Participant

      Thank you everyone. It has put my mind more at ease the past couple days. I needed that. Some times I can get stressed pretty tight which is not good for me. I think I'm at peace now that they are the smart folks and they will fix me if they can. We shall see. Thank you for taking the time to comment.

      Artie

      DZnDef
      Participant

      Good luck on Friday, Artie!  I'm keeping my fingers crossed for you that the MDA folks will fix you up.  Please do keep us posted.

      Cheers,

      Maggie

      DZnDef
      Participant

      Good luck on Friday, Artie!  I'm keeping my fingers crossed for you that the MDA folks will fix you up.  Please do keep us posted.

      Cheers,

      Maggie

      DZnDef
      Participant

      Good luck on Friday, Artie!  I'm keeping my fingers crossed for you that the MDA folks will fix you up.  Please do keep us posted.

      Cheers,

      Maggie

      Polymath
      Participant

      Artie,

      We will be looking forward to your detailed reports, and wish for your positive results at MDA.

      "May the Force be with you"

      Aloha,

      Gary

      Polymath
      Participant

      Artie,

      We will be looking forward to your detailed reports, and wish for your positive results at MDA.

      "May the Force be with you"

      Aloha,

      Gary

      Polymath
      Participant

      Artie,

      We will be looking forward to your detailed reports, and wish for your positive results at MDA.

      "May the Force be with you"

      Aloha,

      Gary

      arthurjedi007
      Participant

      Saw the dr Diab at mda today. I was impressed. One of the first things he said was he wanted complete genetic testing of a couple tumors to figure out why the meds did not work. That's something I've wanted for a long time. So they are working on scheduling the biopsies. Well I say complete but really it's only 500 mutations they look for. But um that's like 497 more than I've had tested so I'm counting that as a good thing.

      I signed the trial papers so I start the keytruda il10 trial on the 16th. He's already thinking ahead for the next trial after that and mentioned a few. I've never had a doc do that before. So that's another good thing. The nurse was going to try to get it started on the 9th but didn't think it could all get ready by then. But 12 days seems pretty good to me.

      Tomorrow they do the baseline scans. Trial required 28 days from start so my August 6th scans are no good. I hope I don't have the nightmare with the MRI contrast or anything again. I did check and it's a different type of contrast. We shall see.

      Artie

       

        Mat
        Participant

        Artie, glad to hear about your experience and good luck with the new trial.  I'm heading to MDA in about a week.

        Mat
        Participant

        Artie, glad to hear about your experience and good luck with the new trial.  I'm heading to MDA in about a week.

        Mat
        Participant

        Artie, glad to hear about your experience and good luck with the new trial.  I'm heading to MDA in about a week.

        jbronicki
        Participant

        That's great news Artie and many of these combos (such as the trial you will be in) do end up having a synergistic effect, and keeping my thoughts on this for you!  Good luck with the contrast, my husband hates the stuff he has to take for his scans, he finds that far worse than the scans themselves.  We will be up at the Melanoma Center on the 14th and 15th of this month.

        jbronicki
        Participant

        That's great news Artie and many of these combos (such as the trial you will be in) do end up having a synergistic effect, and keeping my thoughts on this for you!  Good luck with the contrast, my husband hates the stuff he has to take for his scans, he finds that far worse than the scans themselves.  We will be up at the Melanoma Center on the 14th and 15th of this month.

        jbronicki
        Participant

        That's great news Artie and many of these combos (such as the trial you will be in) do end up having a synergistic effect, and keeping my thoughts on this for you!  Good luck with the contrast, my husband hates the stuff he has to take for his scans, he finds that far worse than the scans themselves.  We will be up at the Melanoma Center on the 14th and 15th of this month.

        specka
        Participant
        Hey Artie!!
        My husband sees Dr. Diab. We live in the northwest and travel just to see this doctor. He has won awards for his research in immunotherapy for melanoma. You’re in good hands.

        I may be very late on this post since you’ve already gone.. but i can give you a recap on our visits. Weve been going every three months since February. Our first trip was scary. The hospital is huge and the appointments are back too back. Everyone is nice and they will help you find your way if you get lost. Dr. Diab’s team is a great group of people. I dont see how anyone could not love them. Very knowledgeable and comforting. I was balling after an appointment when we got the news that the treatment of IPPY didnt work and there was a new spot in my husbands liver. I was in the elevator coming back up from the imaging request office and saw Dr Diab in passing. He saw me balling and he said “its okay, he will be okay.” Im tearing up thinking about that moment. It meant soo much to me.

        We have been to a couple doctors around our home. None of them have given us the same feeling of support. Of any doctor my husband has seen, Dr. Diab is the one we trust.

        specka
        Participant
        Hey Artie!!
        My husband sees Dr. Diab. We live in the northwest and travel just to see this doctor. He has won awards for his research in immunotherapy for melanoma. You’re in good hands.

        I may be very late on this post since you’ve already gone.. but i can give you a recap on our visits. Weve been going every three months since February. Our first trip was scary. The hospital is huge and the appointments are back too back. Everyone is nice and they will help you find your way if you get lost. Dr. Diab’s team is a great group of people. I dont see how anyone could not love them. Very knowledgeable and comforting. I was balling after an appointment when we got the news that the treatment of IPPY didnt work and there was a new spot in my husbands liver. I was in the elevator coming back up from the imaging request office and saw Dr Diab in passing. He saw me balling and he said “its okay, he will be okay.” Im tearing up thinking about that moment. It meant soo much to me.

        We have been to a couple doctors around our home. None of them have given us the same feeling of support. Of any doctor my husband has seen, Dr. Diab is the one we trust.

        specka
        Participant
        Hey Artie!!
        My husband sees Dr. Diab. We live in the northwest and travel just to see this doctor. He has won awards for his research in immunotherapy for melanoma. You’re in good hands.

        I may be very late on this post since you’ve already gone.. but i can give you a recap on our visits. Weve been going every three months since February. Our first trip was scary. The hospital is huge and the appointments are back too back. Everyone is nice and they will help you find your way if you get lost. Dr. Diab’s team is a great group of people. I dont see how anyone could not love them. Very knowledgeable and comforting. I was balling after an appointment when we got the news that the treatment of IPPY didnt work and there was a new spot in my husbands liver. I was in the elevator coming back up from the imaging request office and saw Dr Diab in passing. He saw me balling and he said “its okay, he will be okay.” Im tearing up thinking about that moment. It meant soo much to me.

        We have been to a couple doctors around our home. None of them have given us the same feeling of support. Of any doctor my husband has seen, Dr. Diab is the one we trust.

      arthurjedi007
      Participant

      Saw the dr Diab at mda today. I was impressed. One of the first things he said was he wanted complete genetic testing of a couple tumors to figure out why the meds did not work. That's something I've wanted for a long time. So they are working on scheduling the biopsies. Well I say complete but really it's only 500 mutations they look for. But um that's like 497 more than I've had tested so I'm counting that as a good thing.

      I signed the trial papers so I start the keytruda il10 trial on the 16th. He's already thinking ahead for the next trial after that and mentioned a few. I've never had a doc do that before. So that's another good thing. The nurse was going to try to get it started on the 9th but didn't think it could all get ready by then. But 12 days seems pretty good to me.

      Tomorrow they do the baseline scans. Trial required 28 days from start so my August 6th scans are no good. I hope I don't have the nightmare with the MRI contrast or anything again. I did check and it's a different type of contrast. We shall see.

      Artie

       

      arthurjedi007
      Participant

      Saw the dr Diab at mda today. I was impressed. One of the first things he said was he wanted complete genetic testing of a couple tumors to figure out why the meds did not work. That's something I've wanted for a long time. So they are working on scheduling the biopsies. Well I say complete but really it's only 500 mutations they look for. But um that's like 497 more than I've had tested so I'm counting that as a good thing.

      I signed the trial papers so I start the keytruda il10 trial on the 16th. He's already thinking ahead for the next trial after that and mentioned a few. I've never had a doc do that before. So that's another good thing. The nurse was going to try to get it started on the 9th but didn't think it could all get ready by then. But 12 days seems pretty good to me.

      Tomorrow they do the baseline scans. Trial required 28 days from start so my August 6th scans are no good. I hope I don't have the nightmare with the MRI contrast or anything again. I did check and it's a different type of contrast. We shall see.

      Artie

       

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