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July 23, 2012 at 11:57 pm #20508
We went to the hospital today and got the results of the ct scan he had done last Thursday. The results show “Overall worsening of disease. Enlarging pulminary nodules. New liver lesions. Probable new right renal lesions. New left perinepheric lesion. New and enlarging nodules within the abdominal wall on the left. New pelvic adenopathy. A right inguinal lymph node is now necrotic and decreased in size.”
He has tried radiation, Temodar and 2 1/2 rounds of Zelboraf. The onc says the next thing would be either Ipi or hIL-2.
My question is, what questions do we now pose to his oncologist? We don’t even know where to start with questions now.
ValerieJuly 24, 2012 at 11:35 am #55664Catherine PooleKeymaster
I would ask about the Braf/Mek combo that is in trial and the PD1 trials. Where are you located? Are you at a center of excellence? Maybe another opinion is in order? Some are combining Yervoy and Braf, I would ask about that. I’m sure others might have suggestions, too. Hang in there.July 24, 2012 at 5:29 pm #55665 Thank you Catherine. We are located in southeastern Virginia. He sees a doctor that was at UVA and has been active in clinical trials. I have heard about the Zelboraf and Yervoy trials but not the PD1 trials.July 24, 2012 at 5:32 pm #55666dkmcParticipant Hi if I am not mistaken you all are in the Tidewater area…Have you been to UVA yet? Dr Grosh is good & will help give you more info. Don did ipi with great result(remission @ this time) but Gary must be Braf positive so more options for him. Pour over this site & write down each treatment/trial/radiation/surgery others have done. Research National Cancer Institute site. I also read articles from Yale, science daily,etc. This is what we did. We then took our list to our oncologist, said hey it sure seems like its a crap shoot here so help us decide what to do. And she went through each drug/trial & let us know her opinion. We feel like we could say anything to her & she “gets it”…Don is fighting for his life. It is all in the way you approach your questions. We are a team & she is our guiding team leader. If you have an oncologist who is unwilling to do this with you- ask for another. This gave us some tiny feeling of control. Good luck from Va Beach! KarenJuly 24, 2012 at 6:02 pm #55667 Hi Karen,
Yes, we are in Norfolk. Gary has not been to UVA. His oncologist is at VOA in Norfolk. We asked his onc last week if he thinks Gary should go to UVA. He stated the only thing there for him would be clinical trials. He sees his onc in about an hour. We are going in with an open mind and see what his onc says. I have a few questions written down, but we’d like to see what his onc offers before we ask them.July 24, 2012 at 7:39 pm #55668Catherine PooleKeymaster
Our hope for new therapies lies in clinical trials! I will see what UVA has to offer, I didnt’ see much on their website. You may have to travel further, say to Johns Hopkins in Baltimore for a melanoma expert. It may well be worth it.July 24, 2012 at 10:49 pm #55669 Gary’s oncologist has been in contact with Dr. Grosh. I didn’t know it, but Dr. Grosh is Gary’s oncologists’ associate, they used to work together at UVA. His onc has explained Gary’s history to Dr. Grosh. He is going to call Dr. Grosh again tomorrow about Gary doing the hIL-2 there at UVA. He could do the Ipi locally. We have a lot to think about. If Gary decides to go to UVA, he’d have to be hospitalized for about 10 days. We have to figure out how that’s going to work with my jobs and the kids. Gary won’t go unless I am there with him. I have suggested to him to go with the Ipi first, since it can be done here. This would give us time to do some research and figure out how we’d be able to go to UVA.
Gary has a real fear of hospitals, it goes back to Vietnam. It’s a real fear that he would have to try and overcome in order to do the hIL-2.July 25, 2012 at 12:45 am #55670Shirley ZParticipant
I’m so sorry for all that the two of you are going through. My thoughts and prayers are with you.
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