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Update on Dave

Bermudagirl
Posts: 120
Joined: Jun 2012

Hello everyone,

Dave and I were at Hopkins today for blood work, and to talk to the clinical trial nurse and get some more information about treatment next week. Well Dr. Kelly, the medical oncologist who is running the trial, says that his nurse can not get the hospital that did the initial endoscopy to send back the slides that pathology needs to determine whether the tumor is a HCR receptive, or whatever the correct term is... I'm tired and forgetful tonight. To make a long story short, Dr Kelly calls the hospital, says hi I'm Dr. Kelly from Johns Hopkins and I am a calling about a matter of some urgency. Funny how all the sudden doors open, he's reached the head of pathology there, and lo and behold we can get the slides by 4 this afternoon. Now Dave has to drive to the other side of town to pick them up, but we didn't trust it to Fed Ex or any other courier, time is of the essence! The bad thing is that he needs to drive back downtown to Hopkins in the morning. It just goes to show how even esteemed institutions can sometimes run into SNAFUS.

Since the lab needs to still type the tumor, treatment which was to start on Tuesday will now commence on Thursday of next week. He is slated to get his port on Monday, and then hopefully we can get this show on the road. He's frustrated by having to wait, I'm just frazzled in general, but there seems to be some light at the *beginning* of the tunnel. And we still don't know what protocol chemo he'll be on as not sure whether the tumor is metholated or not. Oy vey... And of course this is the week that I am going to the beach with my mom and kids. I'm still planning on going, I need to get away so I'll be ready to do battle with him!

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Just a little heads up that in Don's case re: HER2 - they did not tell us that if he was positive - it would mean a different radiation machine.

We had quite a delay between diagnosis and actual start date of treatment, so we said we did not want to wait any longer and proceed with the radiation setup that is already in place - Don had already gotten his 'tattoos' for the radiation machine that goes completely around the tumor. The other machine that is used for the clinical trial that Don was offered, only goes about half way around the tumor.

Don's pathology report after surgery said "Poor response to treatment". And at that time, we asked if he was HER2 positive. He is. Would that have changed our minds? Possibly, although the chemo oncologist told us at the time of treatment that there were not enough studies back to indicate that was the way to go and the radiation oncologist thought the treatment as planned for Don was also the way to go.

I wish it would have been explained to us at the time the clinical trial was offered so we can have made a decision before the simulation and tattooing happened and we would have known 'all' the details of the clinical trial.

Judy

Bermudagirl
Posts: 120
Joined: Jun 2012

Thanks, Judy for letting me know this. I'm assuming that the docs at Hopkins are taking this into consideration, but you know what happens when you "assume" something! I'll pass this on to Dave and he can give them a call just to confirm. Another reason why I love this forum.

Sandy

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