Update on Mom from Clinical Trial in San Antonio

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  • #49552
    ashleyc
    Spectator

    Jennifer–

    Since this post, mom has not been back to San Antonio. She was admitted to the hospital for pneumonia 5 weeks ago and is still in the hospital. When she was admitted here, her oncologist came by to see her in the hospital. My dad brought up the treatment she was getting in SA. The doctors there informed us that they were going to do radiation and chemo and then surgery to resect the tumors. Needless to say, that is not what she was sent there for. Her oncologist was livid..they (Doctors in SA) had lied to him also. We were all told that she would be entering a “clinical trial.” That was not the case. Her levels were all too high and she wasn’t strong enough to be on the trial. Our local oncologist at home said that mom would never survive radiation and that she would have died in San Antonio. He left the decision up to us, but we felt very betrayed. The oncologist called and cancelled all future appointments for mom. I have learned through this, that you have to be an advocate for you loved one fighting this disgusting disease. If not, the doctors will (at least in our case) will not fight for the patient either. We didn’t have a good “hopeful” experience with San Antonio in the first place..we should have known with the bad feeling not to go back.

    #49551
    jkalama
    Member

    Ashley,
    Hi – just saw your post. My brother is being seen at UT HSC & he lives in S. A. He has had stents in for almost a year being treated with Prednazone (successfully at first but not now). Now they think it is likely CC, although he has had 11 brushings & ALL came back inconclusive. I live far (NJ) but feel like he is not getting all the info. he needs (or at least not reporting it back to me or my parents who are there with him). What has your experience been since your post? Are you still taking your mom to UTHSC?
    Any info. of your experience can be helpful –
    Thanks
    Jennifer

    #49546
    lainy
    Spectator

    Drats! I just went through our list of Hospitals that have been recommended by our members and outside of MD Anderson, nothing in Texas. I am wondering if it would be worth your while to call MD Anderson and ask if you were to FAX all test data to them could someone look it over and just give you an opinion. Sometimes they will do that. I am also hoping some members may come up with more ideas for you. We do have members who have flown to other cities to get another opinion. I am wishing you the best and please keep us posted.

    #49549
    ashleyc
    Spectator

    It is about 565 miles.

    #49548
    lainy
    Spectator

    Ashley, one more question. Are you far from MD Anderson in Houston?

    #49547
    ashleyc
    Spectator

    Lainy–

    I’m not sure that there is any other help close by, as we were told by moms oncologist here (Amarillo)that there is nothing else he can do, same from the doctors at Baylor in Dallas. The place is throuh the Univeristy of Texas Health and Science Center at San Antonio. I appreciate your help.

    Ashley

    #49550
    lainy
    Spectator

    Ashley, IU am so sorry to hear all this but my gut tells me that I would NOT go back there. I would run to get another opinion closer to home. Where do your parents live? This is all unacceptable in my way of thinking. Tell us where they live and maybe we can help in referring another Doctor. And what was the name of that clinic?

    #4999
    ashleyc
    Spectator

    Well, the trip was a blow in the least. Mom and Dad traveled to SA almost 2 weeks ago. They got there early so that mom could get some extra rest from traveling in the car for 9 hours. Her appt was on a Monday morning at 10:45. They get there and the receptionist says, “what are yall doing here?” “We re-scheduled your appt.” Dad said that no one called and he verified the FOUR different phone numbers to get a hold of them, no missed call or message left. To say the least, he was beyond mad. Mom is in tremendous pain. Dad is not one to make a scene or throw fits, but apparently he did. He demanded that they drove this far, they WERE going to see a doctor and move on with the plan as scheduled. I could make this go on for page and pages..but to make a long story short, it was chaos and a mess. The doctors were so unorganized and didn’t even know anything about her case or history. They did an MRI and CT scan, hopefully will do PET scan soon but insurance has denied it twice. It showed that her tumors have toubled in size. At one point they had shrunk down 50% and now that have grown again. They are both the size of tennis balls. There are also some smaller ones and they did find a spot on her lungs. They said they have no idea what it is. They sent her back home to get stents put in tomorrow and she is jaundiced. What does this mean? It is getting a lot worse that we think? They told her that if she gets the stents in and everthing goes as planned she is “scheduled” to come back to SA on April 18 to receive radiation and possible chemo. The surgeon told her that “if” all that works out she think she can do surgery. We are all so confused and feel like that the doctors are just pushing us around, especially mom. I feel like their outlook is that she will die anyway, so what’s another month without treatment. So what you traveled here 9 hours and you cry because youre in so much pain, just keeping taking your meds and hope that it will get better. I am to the point of beyond frustration with doctors and their knowledge. I could do just as much as what they know just by researching the internet. I apologize for the rant and LONG post. You turn to doctors because they are supposed to know what they are talking about, they are supposed to do all that the can to save your life, make you feel comfortable and that they have faith in what they are doing also. Apparently we just haven’t found “those” doctors.

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